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    MINISITES ASSOTIATIONS



    ACAH - Associació Catalana d’Atàxies Hereditàries

    It is a non-religious, apolitical, non-governmental and non-profit association that aims to improve the quality of life of all those affected by any of the diseases included in the group of ataxias, both those who suffer from them and relatives and close ones.

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    FEMACPA - Federación Española de Malformación de Chiari y Patologías Asociadas

    FEMACPA aims to be the common voice of a group of associations of patients affected by CM (Chiari Malformation) constituted by ANAC, CHYSPA and AEMC. We promote the spread of knowledge about this pathology and its symptoms. Within our federation, we encompass a very specific group, those affected by Chiari Syndrome and associated pathologies such as Spina Bifida, Hydrocephalus, Syringomyelia, rare syndromes related to ours, etc.

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    ACMAH - Associació Catalana de malalts de huntington

    We are a regional, non-profit organization founded in 1998 that develops its associative project around people with Huntington's Disease and their families with the clear goal of improving their quality of life.

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    Entities Minisite Patient73HUB

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    AELAM - Asociación Española de Linfangioleiomiomatosis

    On November 30, 2002, the Spanish Association of Lymphangioleiomyomatosis (AELAM) was established. It is a non-profit social action association, registered in the National Registry of Associations on the 20th of February of 2003 with the number 170172.

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    Asociación Española de la Enfermedad de Behçet

    From the association, we intend that both the patients and the people around us do not feel alone and  we wish to guide and help them as much as possible. We must not forget that together we are stronger, so in the face of possible aid, investigations, meetings, etc. we will be able to act better as an association than each one of us separately.

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    AESTU - Asociación Española de Esclerosis Tuberosa

    Associación Española de Esclerosis Tuberosa (AESTU) is a non-profit association created in March, 2000, in Madrid and does work all around the country. The association works all around the country and centralises its work in its Madrid headquarters, as well as having other delegations in Barcelona and other parts of Spain.

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    ANAC - Asociación nacional amigos de Arnold Chiari

    In 2003, we formed an association with the name of Asociación Nacional Amigos de Arnold Chiari -ANAC- to counsel and support patients and relatives of those affected by craniocervical malformations, the most frequent being Chiari and/or syringomyelia. 

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    ACE - Asociación Cadasil España

    In 2002, José Miguelez was diagnosed with a rare disease called "CADASIL", which his daughter Mary Carmen also inherited. She did not want to resign herself to the fact that her father could not be cured, and she did not want to resign herself to remain passive all her life. Despite having painful symptoms caused by CADASIL, she decided to create an association that would unite those affected and claim the research rights that every patient should have.

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    Asociación 11q España

    11q terminal deletion syndrome is a rare chromosomal abnormality that is classified as a rare disease. It is estimated to affect 1 in every 100,000 births. It is named like such because it is caused by the loss or deletion of the distal end of the long arm of chromosome 11.

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    ASCATSK - Associació Catalana Síndrome de Klinefelter

    Associació Catalana Síndrome de Klinefelter (Catalan Klinefelter Syndrome Association) is a non-religious, apolitical, non-governmental and non-profit association. Its purpose is to improve the quality of life of everyone affected by this syndrome, both those who suffer from it, and their families and their close ones.

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    HPE-ORG - Hipertensión Pulmonar España

    HPE-ORG is a non-profit organization created because of an unmet need in our condition as affected people, caused by the paradigm shift that is occurring in the healthcare system, where the patient takes a more active and responsible role in the management of their disease. 

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    FQ - Asociación Catalana de Fibrosis Quística

    Associació Catalana de Fibrosi Quística was established on the 18th of June 1988 by a group of parents of children affected by this disease who saw the advantages of working together for the benefit of the patients and their families.

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    X Fràgil - Associació Catalana de la Síndrome X fràgil

    Associació Catalana de la Síndrome X fràgil (Catalan Association of Fragile X Syndrome) was founded in 1995 to answer the needs of families with children affected by Fragile X Syndrome. Many of these families have gone through difficult times and face great uncertainty when receiving the diagnosis, and the association becomes a meeting point and a space for support, interaction and exchange of experiences and feelings.

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    Associació Catalana de la Síndrome 22q11

    Associació Catalana de la Síndrome 22q is born out of the need to offer, in Catalonia, a meeting point for the families of those affected by 22q syndrome.

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    Now Know Asociation

    We are a recently-created platform that aims to raise awareness about certain diseases, among which stand out various rare and very rare diseases. We want to facilitate and encourage the collection of data from patients with these diseases and hand it to research centres securely and orderly.

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    AE LALD - Asociación Española Déficit de Lipasa Ácida Lisosomal

    AE LALD is composed of LAL-D patients and their family members and friends. It was born out of the need to organise and join efforts due to the small number of diagnosed cases based on the possible prevalence.

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    Pequeños Superhéroes

    We are an association made up of children with Myotubular Myopathy and Centronuclear myopathy (CNM). CNMs include severe hypotonia with extreme muscle weakness.

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    Objetivo diagnóstico

    We are born out of the need of getting the most important answer, a diagnosis. What are you up against, what is your rival like, how and when will it attack and how to defend yourself, even which is the best way to train yourself to minimise its hits as much as possible.

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    Associació LISA

    Associació LISA promotes support for the development of people with disabilities, giving them relevant information and even condemns the situations that people from this collective have to live through.

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    ACNefi - Associació Catalana de Neurofibromatosi

    ACNefi offers help to those affected and their families through mutual help groups, support groups, informative activities, social networks, divulgation articles about the disease and raising money for research.

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    ACE - Asociación Cistinosis de España

    It is an organisation composed of those affected by Cystinosis, their families and friends. It is a non-profit association, independent of any public or private body. We want to support families and patients, raise awareness about the disease among society, promote and encourage research about the disease and its treatment, and within our possibilities, raise money to achieve our aims.

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    ChySPA - Asociación Chiari y Siringomielia del Principado de Asturias

    Asociación Chiari y Siringomielia del Principado de Asturias (Chiari and Syringomyelia Association of the Principality of Asturias) aims to guide and support those affected by Chiari Malformations, Syringomyelia and associated pathologies, as well as their families and caregivers.

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    AMA - Asociación Madrileña de Ataxias

    We aim to raise awareness, inform and provide comprehensive and multidisciplinary services to help improve the quality of life of people with Ataxias, on our own or along any public or private initiative that has the same objectives as us.

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    AMOI - Asociación Madrileña de Osteogénesis Imperfecta

    The association's main objectives are: to improve the quality of life of those affected by Osteogenesis Imperfecta through actions that comprehend all aspects of their lives (bio-psycho-social), and raising awareness about the disease among healthcare workers and society as a whole. Moreover, the association wished to decrease the families' strain through leisure programmes, mutual help and sensitizing 

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    AMAPAR - Asociación Madrileña de Personas con Artritis Reumatoide

    It is a non-profit association that works to improve the quality of life of patients with Rheumatoid Arthritis and related diseases in the Community of Madrid. It promotes attention and information regarding healthcare and family and social relationships, and palliates the issues that may appear during the course of the disease.

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    AMARE - Asociación Malagueña de Artritis Reumatoide

    It is a non-profit association founded in 2000 thanks to the support of rheumatologists Dr Mª Victoria Irigoyen and Dr Inmaculada. It gathers the collective of those affected by rheumatoid arthritis, psoriatic arthritis and juvenile idiopathic arthritis. Its purposes are to obtain healthcare means available to everyone affected and the complete their integration at all levels.

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    AMES - Asociación Miastenia de España

    Since its creation, AMES has been comprised of those affected by myasthenia gravis, congenital myasthenia, and any other myasthenic syndrome and their families. We are a non-profit association, declared a public utility organisation.

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    AME - Asociación Microtia España

    The Association arises from the concerns of a group of families with the intention, among others, to gather and connect children, teenagers and adults with microtia. This way, we can create the necessary synergies to help us improve and strengthen all aspects and processes related to microtia, acting as a bridge between families and different environments.

     

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    ACSPW - Asociación Catalana para el Síndrome de Prader Willi

    The association was created in 1996. Its scope of activity is Catalonia. It works to improve the quality of life of those affected and their families, raising awareness about the syndrome and its characteristics in different spheres: healthcare, education, work, etc.

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    AEPMI - Asociación de Enfermos de Patología Mitocondrial

    It is a non-profit organisation founded in Seville as an initiative of two parents of patients and three patients. Over the years, it has extended its scope of action to all of Spain. They carry out a range of solidarity initiatives with the aim of raising money to continue the research that the association is already carrying out, but also to promote new projects that guarantee the continuity of research into these diseases.

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    ADEFHIC - Asociación de Enfermos y Familiares de Hipertensión Intracraneal Idiopática – Pseudotumor Cerebri

    It was created in 2014 as a nationwide, non-profit organisation thanks to the interest of those affected and their families to have a meeting point to have support and guidance. This is why the association will always base itself on medical articles and research, as well as the advice of any professionals who wish to collaborate with us (ADEFHIC will never replace the recommendations of medical professionals).

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    AELIP - Asociación de Familiares y Afectados de Lipodistrofias

    It is composed of parents, relatives, and professionals of all areas, with the aim of creating spaces for the exchange and coexistence among people diagnosed with lipodystrophies and their relatives. It also aims at raising awareness about the public health issue represented by lipodystrophies, which are rare due to their low prevalence

     

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    AFASCOL - Asociación de Familiares y Afectados por el Síndrome de Stickler SEDC y Otras Colagenopatías Tipo II

    We are a group of parents, family members and patients who decided to gather together in 2016. Our main objective is to raise awareness so that rare diseases derived from a mutation in the COL2A1 gene are known, speed up diagnosis and support those affected and their families.

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    AFAPAC - Asociación de Familiares y Afectados por Patologías del Crecimiento

    It is a national, non-profit, charitable and social organisation, that aims to provide care, in all aspects, to those with growth problems. It is composed, essentially, of those with children or family members with this disorder, those affected and those interested in the different kinds of bone dysplasias. They want to raise awareness among society about growth pathologies and help with their inclusion and normalisation.

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    SCDL - Asociación Española del Síndrome de Cornelia de Lange

    The association was created in 1998 by a group of affected families with the purpose of improving the quality of life of those with CdLS and their families. It is the only one in the country. The objective that moved them to create this association was the wish to guide and counsel those affected by CdLS so that they know they are not alone on this road.

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    AESHA - Asociación Española del Síndrome de la Hemiplejia Alternante

    It is a non-profit association composed of families and a scientific committee centralised in Sant Joan de Déu Hospital in Barcelona. The association contributes to the promotion of a proper diagnosis, the training of healthcare workers and the international exchange of information. Moreover, it also offers support to families and children with AH and participates in international research projects.

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    AEG - Asociación Española para la Galactosemia

    It is a non-profit association composed of families affected by any kind of Galactosemia, GALK, GALT, GALE or DUARTE. Their objective is to connect families with children and adults with galactosemia around the country and offer them help and the exchange of experiences, information and ideas.

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    AANF - Asociación de Afectados de Neurofibromatosis

    We are a non-profit organisation created in 1997 with the aim of helping improve the quality of life of those affected by neurofibromatosis. We are the only association in the country for this pathology.

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    AEMC - Asociación Española de Afectados por Malformaciones Craneo-Cervicales

    AEMC is an association conceived and created by affected patients, with severe aftereffects, given the lack of information, not available until very recently, regarding these pathologies.

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    AEVH - Asociación Española De Enfermos Vasculares Hepáticos

    AEVH (Asociación Española de Enfermedades Vasculares Hepáticas) was founded in 2015 to promote the knowledge of this group of rare diseases and its research.

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    MPS España Lisosomales

    Associació MPS Espanya (MPS Association Spain) is a non-profit organization that works every day to raise awareness of Lysosomal diseases such as Mucopolysaccharidoses, Fabry Disease and Gaucher Disease, among others. Our mission is to support people and families who suffer from these pathologies, improve their quality of life and promote their social integration.

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    KAT6B

    KAT6B

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    ABEA - Asociación Balear de la Enfermedad de Andrade

    It is a non-profit association created in 1997 by Dr Munar Qués and a group of people affected by Corino de Andrade's disease (transthyretin-related hereditary amyloidosis). It aims to raise awareness of the disease among hospitals, doctors and healthcare workers to improve early diagnosis, as well as help those affected and their families.

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    AMPASTTA - Asociación Madrileña de Pacientes con Síndrome de Tourette y Trastornos Asociados

    The association was created on the 15th of November as the result of the union of four families whose children suffered from Tourette Syndrome, and as often happens with these kinds of diseases, they felt lost, alienated and disorientated.

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    ASMES - Asociación Síndrome de Ménière España

    It is an association formed by patients and relatives that represents all those affected by Ménière Syndrome in Spain. It is a national non-profit organization.

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    Fràter de Girona

    We are a non-profit organisation. Our mission is to help boost the growth of people with disabilities and their comprehensive development through shared activities and experiences, and to work to have a more egalitarian society where all human beings, regardless of their disabilities, can live with total dignity.

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    GENE PEOPLE – the Genetic Conditions Support Network

    It is an organisation whose mission is to be the leading source of information and support for both those affected by a genetic condition, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.

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    UniRares - Association pour les patients isolés, atteints de maladies rares

    UniRares aims to unite patients and relatives of patients affected by rare diseases who do not benefit from the support of an association governed by Swiss law specific to their pathology.

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    Sdruzeni META - sdruzeni pacientu se stradavymi onemocnenimi

    Association working with patients with rare chronic diseases, which include Fabry and Gaucher disease, Pompe disease and Mucopolysaccharidosis. Provides information about diseases and their treatment and helps patients cope with the disease and find a way to live with it. The activities of the association contribute significantly to improving the lives of patients and their families.

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    Fundación Española de Enfermedades Priónicas

    Non-profit organization, created due to the existence of a rare, devastating and deadly disease affecting the brain and nervous system, known as prion disease or Transmissible Spongiform Encephalopathy (TSE).

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    DISMO - Asociación de discapacitados de Molina de Segura y Vega Media

    Association of people with physical and intellectual disabilities and rare diseases of Molina de Segura, which was created in 1981, with the aim of defending the rights of people with disabilities.

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    Association of families of affected people whose main objective is focused on improving the quality of life of those affected. The secondary objectives are to promote research, visibility and be interlocutors of families with the association of public and private institutions.

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    ENACH - Asociación de Enfermos con Neurodegeneración por Acumulación Cerebral de Hierro

    Enach Association is a Non-Governmental and Non-Profit Organization that was born in 2013 in Spain as an initiative of a group of relatives and friends of people affected by any of the diseases of the NACH group (Neurodegeneration due to Brain Iron Accumulation).

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    ORDI - Organization For Rare Diseases India

    It is a national umbrella organization representing the collective voice of all patients with rare diseases in India. ORDI’s mission is to be the strong united voice for all rare diseases in India, to reduce inequalities and ensure that people living with rare diseases have access to the same resources as any other population.

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    JPA - Japan Patients Association

    The JPA aims to realize a society where everyone can live with peace of mind by eliminating social barriers caused by illness and disability. By aggregating the voices of patients and their families across all Japan and conveying them to relevant parties, the organisation has been working to expand the necessary medical care and social welfare.

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    ASEM - Associació catalana de persones amb malalties neuromusculars

    It is a non-profit organization that aims to take care of people with neuromuscular diseases, their families and professionals who work and are in contact with this collective. Asem Catalunya is the model centre in Catalonia for people with neuromuscular diseases thanks to the psychosocial work it has been carrying out since its beginnings in the 80s.

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    FMF - Asociación Española de Fiebre Mediterránea familiar

    Asociación Española de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios, Stop FMF, is country-wide, non-profit association declared of Public Interest. Its main aim is to improve the quality of life of the patients affected by autoinflammatory syndromes and their families.

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    GERNA - Grupo de Enfermedades Raras de Navarra

    Reference group of people and families with rare or infrequent diseases in Navarra, fighting to ensure full social, health, educational and labor inclusion of people and families affected by this problem under conditions of equity.

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    VKS - Volwassenen, Kinderen en Stofwisselingsziekten

    Association from the Netherlands aimed at people with inherited metabolic diseases. It is a patient association committed to three important tasks: to provide information about the diseases that is understandable to patients, to ensure contact between patients and the exchange of information, and to represent the interests of patients within and outside the healthcare environment.

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    AEPEF - Asociación Española de Paraparesia Espástica Familiar

    It is a non-governmental, non-profit organization, founded in Seville on October 19, 2002 by a group of people affected by motor disorders, who could not find a correct diagnosis for their disease .

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    AISMME - Associazione Italiana Sostegno Malattie Metaboliche Ereditarie

    Since 2005 Aismme has been committed to supporting patients and their families and has been carrying out activities to raise awareness and disseminate knowledge of hereditary metabolic diseases.

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    MPS Poland - Stowarzyszenie Chorych na Mukopolisacharydozę i Choroby Rzadkie

    Among the many objectives of the Mucopolysaccharidosis and Rare Diseases Patients' Association, it is worth highlighting: action in the field of integration of families affected by MPS and other Rare Diseases; the search for greater visibility, drawing the public's attention to ultra-rare diseases and fundraising to organise comprehensive care for children affected by the disease and their families.

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    Gauchers Association

    The Gauchers Association is the only registered UK charity providing support to individuals and families affected by Gaucher Disease, acting as the centre point for the Gaucher community working alongside medical professionals, scientists and the pharmaceutical industry to meet its aims.

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    AFHyMaGe - Association Francophone Hypertriglycéridémies Majeures Génétiques

    It is an association whose aim is to help people with hypertriglyceridaemia and their carers. Its main objectives are to inform the public, the medical profession and health authorities; to support families by providing technical and moral support and to contribute to medical research and the improvement of care practices.

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    asGLUTdiece - Asociación de Glut1 y otras enfermedades que responden a la Dieta Cetogénica

    Association of families that aims to promote and disseminate among hospitals, research centers, therapists, patients and family members the brain glucose transporter GLUT1 deficiency and ketogenic treatment.

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    ADERLE - Asociación de Enfermedades Raras de León

    Association that works to make visible, support and help all patients and families affected by Rare Diseases and those without diagnosis to contribute to maintaining and improving their quality of life. It aims to create a space for the exchange of experiences, as well as to raise awareness of the social, political and health care abandonment faced by the family environment of a patient with a RD.

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    FEGEREC - Federación Gallega de Enfermedades Raras y Crónicas

    Fegerec was born with the aim of optimizing and making the most of resources and efforts in order to improve the common needs in the socio-health field of a very heterogeneous group: people who suffer from a rare disease in Galicia.

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    CHARD - China Alliance for Rare Diseases

    It is a national, non-profit platform composed of medical institutions, universities, research institutes, enterprises and other subjects with rare disease diagnosis and treatment capabilities. The organisation aims to improve the level of diagnosis and treatment, reinforce the training of medical personnel and strengthen international cooperation.

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    ANAHO - Asociación Nacional de Afectados por Holt-Oram

    Association created to give visibility to those affected by Holt Oram Syndrome (HOS) and to put them in contact to create support networks.

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    ASrid - Advocacy Service for Rare and Intractable Diseases

    It is an intermediary non-profit organisation that focuses on all rare and intractable diseases in Japan. It works with patients and other stakeholders to support them, promote drug development and raise public awareness.

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    MPS Society UK

    The MPS Society provides support across the UK to families affected by rare, life-limiting genetic conditions. These genetic conditions cause a range of complex difficulties and we provide vital support to the whole family for as long as they need it.  

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    VML Suisse - Vaincre les Maladies Lysosomales

    The objectives of the association are: to inform patients about their illness and the state of medical knowledge, to allow a first consideration of the needs of patients and their families, to help in filling in the various documents for public support and other applications and to offer active listening.

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    NSPKU - Národní sdružení PKU a jiných DMP

    A non-profit organisation that brings together patients with PKU and similar inherited metabolic disorders from all over the Czech Republic. The association helps patients to improve their quality of life and advocates for their interests, organises events and shares experiences, and follows developments in the treatment and research of these diseases.

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    RDHK - Rare Disease Hong Kong

    It is an organisation composed of rare disease patients and their families and supported by relevant experts and academics. It works to raise awareness of rare diseases through collaboration with stakeholders and to jointly advocate for the improvement of rare disease policies, so that patients' basic rights can be enhanced.

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    MRDS - Malaysian Rare Disorders Society

    MRDS es una organización voluntaria creada para representar y velar por el bienestar de las personas afectadas por enfermedades raras y sus familias. La organización trabaja para concienciar, compartir las últimas investigaciones médicas realizadas sobre enfermedades raras específicas y apoyar a los padres de niños con este tipo de enfermedades.

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    METODEJ - MEzi TOlika DĚtmi Jediný

    A non-profit organization from the Czech Republic that brings together parents of children with rare diseases of metabolic origin, or the patients themselves. The main goal is mutual cooperation to solve both  specific problems of metabolically ill children and problems that commonly appear in the lives of the patients ant their families.

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    RADOIR - Rare Diseases Foundation Of Iran

    Rare Diseases Foundation of Iran is a non-profit institution with national and international sphere of operation. This foundation was established in 2008 given the requirements of the health system and lack of an organization to support rare disease patients in Iran.

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    AFQCV - Associació de Fibrosi Quística de la Comunitat Valenciana

    The Cystic Fibrosis Association of the Valencian Community is a non-profit association, formed by people with CF, family and friends, dedicated to improving the living conditions of people with CF and their families throughout the Valencian Community.

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    Lysosomale Belgique

    It is an association of parents and patients determined to overcome lysosomal diseases and to find answers for a better everyday life. They offer help and support services to patients and their families and promote scientific and medical knowledge.

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    KMSK - Förderverein für Kinder mit seltenen Krankheiten

    The non-profit association for children with rare diseases (KMSK) supports the families affected by a rare disease financially, holds family events to connect them and promotes the transfer of knowledge on the subject of "rare diseases in children and young people" among parents, professionals and the general public.

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    RARE Ireland Family Support Network

    Rare Ireland is the only organisation in Ireland created to specifically support families living with rare diseases. It provides support based on the needs of each family and strives to raise awareness of rare diseases in children, celebrate milestones and raise public awareness of rare diseases in Ireland.

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    NORBS - Nacionalna organizacija za retke bolesti Srbije

    The National Organization for Rare Diseases of Serbia is an alliance of associations dealing with issues of people with rare diseases and their family members. In order to raise public awareness about rare diseases, the alliance organizes round tables, conferences, consultations and various other events and collaborates with various associations on several large projects.

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    Canadian MPS Society

    An organization committed to providing support to individuals and families affected with MPS and related diseases, educating medical professionals and the general public about MPS, and raising funds for research so that one day there will be cures for all MPS and related diseases.

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    The Isaac Foundation

    The Isaac Foundation’s mission is to fund innovative research projects that aim to find a cure for MPS, a rare, debilitating, and devastating disease. It provides support for families of individuals suffering from MPS and advocate on their behalf to ensure government funding for expensive, life-sustaining treatments are covered by the health care system.

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    Genetic Alliance UK

    It is a national charity and an alliance of over 200 patient organisations, supporting those affected by genetic conditions. Genetic Alliance UK's aim is to improve the lives of people affected by genetic conditions, ensuring that high quality services and information are available to all who need them.

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    Metabolic Support UK

    It is a leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide that have no other support and raising awareness to improve the lives of those affected by Inherited Metabolic Disorders

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    MGR - Associazione Malattie Genetiche Rare Svizzera Italiana

    The Association of Rare Genetic Diseases of Italian Switzerland (MGR) stems from the conviction that rare genetic disease does not necessarily mean "orphan" disease, as well as from the desire to offer patients residing in Italian Switzerland concrete social support and on site, following them over time, but also dealing effectively and quickly with situations of immediate need.

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    Fundación Poco Frecuente

    Member of the Spanish Federation of Rare Diseases (FEDER), its main lines of work are research, the development of projects, initiatives and activities of a social nature and education and communication to raise awareness about rare diseases.

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    Piensa en Metabólico - Federación Española de Enfermedades Metabólicas Hereditarias

    The Spanish Federation of Hereditary Metabolic Diseases aims to improve the quality of life of those affected by metabolopathies and aminoacidopathies, advising and assisting them and their families in medical, psychological and welfare care, etc.; working towards an adequate affective and educational development.

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    Asociación de Enfermedades Raras D'Genes

    The D'Genes Association is made up of people affected by a Rare Disease, family members and professionals from various fields, with the aim of creating a socio-health space that also serves as a place for exchange and coexistence among those interested, as well as promoting the dissemination and raising awareness of the public health problems caused by rare pathologies.

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    American Liver Foundation

    It is a nonprofit organization that works to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease.

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    LDN - Lysosomal Disease Network USA

    The combined and integrated efforts of the Lysosomal Disease Network are focused towards creating a network of centers with expertise in one or more of lysosomal diseases in order to solve major challenges in diagnosis, disease management, and therapy. Solutions to these problems will have direct impact on the patients and important implications for medical practice.

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    FEMEXER - Federación Mexicana de Enfermedades Raras

    The Mexican Federation for Rare Diseases (FEMEXER) is a non-governmental and all-volunteer alliance of patient organisations, led exclusively by patients and families representing more than 85 rare disease patient organisations in Mexico, covering almost 500 rare diseases.

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    ALDAN - Asociación de Lucha contra la Distonía en Andalucía

    In ALDAN we are working from different sources to improve the health care of all Dystonia patients in Andalusia and to make Dystonia visible, so that health professionals and the administration take us into account and achieve an equal health care to other more known diseases.

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    NUPA - Asociación Española de Ayuda a Niños con Trasplante Multivisceral y Nutrición Parenteral y Afectados

    In 2006 NUPA was legally established to offer integral, free and individualized help, allowing an improvement in the quality of life of people with intestinal failure, parenteral nutrition and/or multivisceral transplant of up to eight vital organs and their family caregivers, generating a national impact to date in more than 500 families.

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    AMMeC -Associazione Malattie Metaboliche Congenite

    It is an association founded to promote greater knowledge of metabolic diseases, promote the recognition of these pathologies considered "orphans" and stimulate medical scientific research and prevention, training and specialization of doctors.

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    APL - Associação Portuguesa de Doenças do Lisossoma

    The primary objective of APL is informing families affected by lysosomal diseases. The association is committed to helping in all aspects: moral, social, cultural, administrative, medical, technical and financial.

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    APOFEN - Associação Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas

    APOFEN is the Portuguese Association of Phenylketonuria and Other Metabolic Diseases and represents some of the pathologies tracked in the Guthrie test. Its mission is to support all patients and families who live closely these pathologies.

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    APCDG-DMR - Portuguese Association for CDG and other Rare Metabolic Diseases

    The Portuguese Association for CDG and other Rare Metabolic Diseases is a nonprofit-organization aimed at fostering breakthrough research that make an important difference in the lives of patients and their family members.

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    FECOER - Federación Colombiana de Enfermedades Raras

    To work in a structured and unified way on the needs of people affected by rare diseases and their families, the Colombian Federation of Rare Diseases is created on behalf of all associations and all existing rare diseases and those to be diagnosed in Colombia.

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    MaRaVal - Maladies Rares Valais

    The goals of the association are to improve knowledge about rare diseases and their detection, to increase the competencies of all those involved, to promote the autonomy of patients and their families, to empower relatives in their role as caregivers and to reduce the burden that the disease places on those affected, especially the most vulnerable.

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    SPATZ - Selbsthilfe für Kinder mit chronischer Stoffwechsel-, Hormon- oder Zuckererkrankung e. V.

    It is an organization made up of affected parents, doctors, pharmacists and other committed people who want to help children with diabetes or congenital hormonal or metabolic diseases to have the opportunity to lead a normal life, provided they accept the therapy and diet they need.

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    ANBR - Alianta Nationala pentru Boli Rare Romania

    The National Alliance for Rare Diseases in Romania was created by bringing together rare disease organisations and non-association patient groups. The alliance's mission is to develop and carry out lobbying and advocacy activities to improve the quality of life of rare disease patients in Romania.

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    Rare Diseases South Africa

    Rare Diseases South Africa (RDSA) is a non-profit organisation advocating to ensure that people living with rare diseases and congenital disorders experience greater recognition, support, improved health service and a better overall quality of life.

    +INFO
    Rare Disease Ghana Initiative

    Rare Disease Ghana Initiative is the National Nongovernmental Organization leading advocacy and coordinating care for Undiagnosed, Genetic and Rare Disorders in Ghana. Its mission is to improve the quality of life of persons living with a rare disease in Ghana.

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    Cometa ASMME - Associazione Studio Malattie Metaboliche Ereditarie

    The Association fights every day in order to support research projects aimed at identifying metabolic causes of mental retardation and at the early diagnosis and prevention of hereditary metabolic diseases. It also promotes and supports initiatives in favor of metabolic patients, their families and to raise public awareness.

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    CYC - Child Youth Care Zimbabwe

    A non-profit organisation based in Zimbabwe, focused on improving the quality of life of families living with a rare disease. They work to raise awareness through education and advocate for the rights of people living with rare diseases and their families.

    +INFO
    BORDIS - Botswana Organisation for Rare Diseases

    BORDIS is a non-profit organisation whose mission is to build strong partnerships and networks in Botswana and around the world to leverage the resources and input needed to ensure access to diagnosis, appropriate treatments and management of rare disease patients in Botswana.

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    CORD - Chinese Organization for Rare Disorders

    It is a non-profit organization committed to promoting rare disease patient groups and organizations; strengthen the public's understanding of rare diseases; improve the availability of rare disease drugs for patients; promote rare disease scientific research and translational medicine; and carry out international research in the field of rare diseases.

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    ICF - Illness Challenge Foundation

    ICF is committed to support patient organizations  that focus on medical  treatment and rehabilitation as well as promoting rights advocacy for patients with rare diseases. It aims to establish platforms which involve participation from multiple actors and agencies to promote for a better social coverage for rare diseases.

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    De Neu - Asociación de Enfermedades de los Neurotransmisores

    De Neu is a meeting point for all people interested in neurotransmitter diseases with the aim of promoting medical, scientific and technical research that helps to improve the quality of life of children with neurotransmitter diseases, as well as helping to spread the knowledge of Neurotransmitter Diseases.

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    RaDiOrg – Rare Diseases organisation Belgium

    It is the Belgian umbrella association for people living with a rare disease and works to ensure that their voices are heard, raise awareness among the general public and connect people and promote activities for people affected by rare diseases.

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    PASIFASMEN - Hellenic Association of Friends and Patients with rare metabolic and endocrinologic diseases

    Association working to guarantee the rights of rare disease patients, to promote research, treatment and rehabilitation of rare diseases and to achieve greater involvement of public administrations.

    +INFO
    Retina International

    Retina International (RI) is a global umbrella organisation for patient-led charities and foundations who support research into rare, genetically inherited and age-related forms of retinal disease. Retina International is a registered charity in Ireland.

    +INFO
    RDK - Rare Disorders Kenya

    Rare Disorders Kenya (RDK) is a patient led organization comprising of patients, parents and caregivers of persons diagnosed with rare diseases in Kenya. Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.

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    Unique UK

    Unique's mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single gene disorder associated with learning disability/developmental delay and to raise public awareness.

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    APSOCECAT - Associació Catalana pro Persones amb Sordceguesa

    It is an association comprised of people with Deafblindness of all ages, as well as their families. With enthusiasm, we promote the best opportunities for people with this disability. It is our mission to guarantee the rights and improve the well-being of people with deafblindness and their families.

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    AEMO - Association Enfance et Maladies Orphelines

    An association that works to inform and raise public awareness on the subject of rare diseases, to raise funds to support initiatives or actions related to rare diseases, to help children and young people in difficulty, domiciled in Switzerland and affected by rare diseases, to help other entities with a similar objective and to support scientific research.

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    ProRaris - Alliance Maladies Rares - Suisse

    ProRaris is an umbrella organization that represents rare disease patients and their associations and defends their interests. By pooling their strengths, associations and patients speak with one voice and give more weight to their positions and their demands vis-à-vis their interlocutors: from health professionals to public authorities.

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    Aspida Zois (Life Shield)

    "Aspida Zois" (Life Shield) is a non-profit Association for patients, families and friends of patients suffering from Inherited Metabolic Diseases (IMDs). The aim of the association is generally to provide all possible scientific, social and moral support to those suffering from inherited metabolic diseases and their families.

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    Irish MPS Society

    It is a voluntary support group which represents and supports children and adults suffering from Mucopolysaccharide and related diseases, their families, carers and professionals. The aims of the association are: to act as a support network for those affected by MPS and related diseases, to bring about more public awareness and to promote and support research into MPS and related diseases.

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    LAL-D Aware

    Organization created by parents whose children were diagnosed with Wolman Disease who realized there was a need for a caring support community. Its mission is to provide support for patients and families who have been affected by LAL Deficiency, a rare and devastating disease, and to educate and raise awareness to the medical community.

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    Aux Pas Du Coeur

    It is a non-profit organisation focusing on rare genetic diseases in Ivory Coast. Its mission is to raise awareness and advocate for early diagnosis, contribute to medical education, create a patient registry for accurate statistics, create a patient community and break the isolation and despair of patients and their families.

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    PSOD - Philippine Society for Orphan Disorders

    It is an organisation working to uphold the primary concerns and welfare of individuals with rare disorders by directly addressing, supporting and protecting their health and general well being. Its vision is to be the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for the individuals with orphan or rare disorders in the Philippines.

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    Canadian Liver Foundation

    An organization that works to improve prevention, screening, diagnostics, and treatments in order to reduce the incidence and impact of liver disease through research. Its main goal is to improve the lives of liver disease patients and protect others who are at risk and to eliminate the barriers that may limit patients’ access to research breakthroughs.

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    FEPER - Federación Peruana de Enfermedades Raras

    Alliance formed by associations and people with rare diseases in Peru. Its objectives are to fight for better treatment, laws and respect for the rights of people affected by a rare disease.

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    ATUERU - Asociación Todos Unidos Enfermedades Raras Uruguay

    Organización que trabaja para dar apoyo a los afectados por enfermedades raras y a sus familiares y cuidadores; contribuir a la ayuda física, psicológica, social y moral de todas las personas afectadas; promover la integración social y laboral de las personas con discapacidad y/o enfermedades raras; y defensar el cumplimiento de las leyes y normativas existentes sobre minusvalías físicas, intelectuales y enfermos crónicos.

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    AHEDYSIA - Asociación Humanitaria de Enfermedades Degenerativas y Síndromes de la Infancia y Adolescencia

    AHEDYSIA is a non-governmental, national, non-profit association formed in November 1999 by a group of mothers with children affected by neurodegenerative diseases and rare syndromes. AHEDYSIA dedicates all of its economic and human resources to improve the quality of life of children with neurodegenerative diseases or rare syndromes, and to help their families by offering them support.

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    ESGLD - European Study Group on Lysosomal Diseases

    The ESGLD promotes collaboration and exchange between European research groups in laboratory and clinical disciplines which are interested in lysosomal storage diseases.

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    RDB - Rare Disorders Belgium

    RDB is a non-profit organization that aims to help patients to better understand their rare disease or their handicap, to bring their loneliness to an end, and to assist them to benefit from the legal, social and insurance rights they are entitled to receive.

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    VML - Vaincre les Maladies Lysosomales

    VML is the only association in France that allows all those affected by one of the 50 lysosomal diseases to make their voices heard and to pool investments in scientific and medical research.

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    AIMPS - Associazione Italiana Mucopolisaccaridosi e Malattie Affini

    The aim of the association is to meet the information needs of families with MPS and to facilitate the exchange of experiences about the disease. In addition, it also organises public awareness campaigns and invests in scientific research.

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    ABM - Associazione per la Tutela del Bambino con Malattie Metaboliche

    The association has become a point of reference, support and information in the field of metabolic diseases in Italy.

    +INFO
    La Gemma Rara

    An association that aims to help people with rare genetic diseases. Its activity is aimed at encouraging the study and research for the diagnosis and prevention of these diseases and to mitigate the problems of health and social discomfort that these diseases entail for the affected people and for their families.

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    WILLEFONDEN

    Willefonden works to ensure that children and young people who have an undiagnosed illness receive a diagnosis. Willefonden's goal is to fight the undiagnosed diseases in order to save the lives of children and teenagers and to influence and inform politicians and society in general about the importance of a diagnosis.

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    Rare Disorders New Zealand

    It is an umbrella group for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for patients with a rare condition. Its mission is to amplify the collective voice to improve healthcare and wellbeing for people living with a rare disorder and their families and achieve an equitable access to health and social care.

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    FADEPOF - Federación Argentina de Enfermedades Poco Frecuentes

    Second-degree civil organisation, made up of organisations and groups of patients and/or family members working with a rare disease. The organisation focuses its efforts on strengthening its members, transferring tools and technology to enhance their actions and impact on society.

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    Russian Patients Association

    Association bringing together 14 national and inter-regional organisations and more than 80 regional patient NGOs representing the interests of more than 5 million patients with severe disabling diseases in the Russian Federation.

    +INFO
    BOKS - Belgische Organisatie voor Kinderen en volwassenen met een Stofwisselingsziekte vzw

    The Belgian Organisation for Children and Adults with a Metabolic Disease is a voluntary association that is an umbrella organisation for all metabolic diseases.

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    Genetic Alliance Australia

    An organisation that works to facilitate contact between families and individuals affected by the same or a similar illness, and to provide them with support and information. GA also offers various services and facilitates ongoing support to individuals, families, health professionals and other interested groups.

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    ASFAPE - Asociación de Familias con Perthes

    Non-profit association that works to raise awareness and disseminate the reality and needs of people affected by Legg-Calvé-Perthes disease; advise parents, schools and leisure organizations to obtain the welfare of those affected, promote and encourage research into the disease and seek collaboration and support from institutions and agencies both official and private.

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    SAF España - Asociación Española de Afectados de Síndrome Antifosfolípido

    Association formed by a group of people affected by antiphospholipid syndrome, family members, volunteers and collaborating partners that works to provide information and advice to people affected by the syndrome as well as to raise awareness of the disease and promote research on it.

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    Association of relatives of children suffering from neuroblastoma that works to provide families with the help and information that allows them to face the diagnosis and the process of the disease, to inform those affected of scientific advances and to collaborate and stimulate, at an economic and social level, research aimed at curing the disease.

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    ALFA-1 ESPAÑA

    Organization created by a group of patients to defend the interests of those affected by Alpha-1 Antitrypsin Deficiency and their families. Among its tasks is the defense of the necessary social and sanitary services for the patients and affected by the Deficit and to promote the early detection of this genetic condition, in order to improve the prevention and prognosis of the ailments linked to the Deficit. Translated with www.DeepL.com/Translator (free version)

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    ADIBI - Asociación ADIBI. Asociación de Discapacitados y Enfermedades Raras de IBI

    It is a non-profit association created in 2002 by those affected by physical disabilities, rare diseases and their families. Our mission is to improve the quality of life of those with disabilities and/or those affected by rare diseases and their families.

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    Asociación de Afectados de CDKL5

    It is a non-profit association created in 2014 mainly by parents and family members of patients affected by this disorder. Support is essential for CDKL5 families. After the diagnosis, families should be directed to their country's association to get information and support.

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    FQ - Asociación Andaluza de Fibrosis Quística

    It is a non-profit association at an autonomic level that works to improve the quality of life of people with CF, as well as to spread knowledge about this disease. The association was created in 1986, promoted by a group of families with children with CF who were fighting against the disease and demanding better care. 

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    AACIC - Asociación de Cardiopatías Congénitas

    The association was created in 194 when a group of parents with children with congenital heart disease shared long waiting times in the ICU at the hospital. During this time, they talked about how they were, how they felt, what they thought, their fears, doubts, worries...

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    ALDEC - Asociación de Lucha contra la Distonia de Cataluña

    ALDEC is an association created to help those affected by dystonia, both patients and their families. The association informs and raises awareness among society about what the disease is and what is being done for those affected, and shares news articles or advice about anything related to dystonia.

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    AFANOC - Associació de Familiars i Amics de Nens Oncològics de Catalunya

    It is a non-profit and non-religious association that has a solidary vision and values such as social justice and commitment, responsibility, quality management and free services offered to all children and teenagers with cancer and their families.

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    ARESBI - Asociación Araba Elkartea Espina Bífida e Hidrocefalia

    It is a non-profit association created in 2008. It aims for the complete integration and normalisation at all levels of people with Spina Bifida and/or hydrocephalus, or other pathologies with similar medical and social issues; as well as promoting and perfecting as much as possible the welfare, educational, labour and social level.

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    ACTAYS - Acción y Cura para Tay Sachs

    ACTAYS was created to find the cure for Tay-Sachs disease and Sandhoff disease. While it still is its main objective, it currently divides its work into programmes focused on helping children affected by other neurological diseases through psychosocial intervention programmes.

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    ALBA - Asociación de Ayuda a Personas con Albinismo

    It was created in València in 2005 and gathers people with albinism and their families, as well as professionals interested in this genetic disorder. ALBA is moved by the wish for everyone with albinism to grow, study, work and develop in a society without intolerance and myths about this genetic disorder.

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    AMC - España - Artrogriposis Múltiple Congénita - España

    We are a state-wide non-profit association. It was founded in Spain in 2014 with the hope of pooling resources, promoting interpersonal relationships with affected families and entities related to Arthrogryposis.  Our general objective is to achieve an improvement in the quality of life of people with Arthrogryposis and their families. 

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    Asociación Castellano Leonesa de Afectados de Retinosis Pigmentaria

    In 1988, a group of people decided to create the association in Valencia. In the founding act, the main aims of the association were stated as cooperation and mutual help among those affected and, of course, the main objective of looking for solutions to this disease.

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    ACAEBH - Asociación Catalana de Espina Bífida e Hidrocefalia

    It is a non-profit association with 50 years of experience that aims to promote the autonomy of people with Spina Bifida and Hydrocephalus through personalised social care for those affected and their families. This is done by organising conferences and activities about healthcare and inclusive leisure.

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    ASANOL - Asociación de Atrofia de Nervio Óptico de Léber

    The Leber's Optic Nerve Atrophy Association (ASANOL) is a non-profit organization managed by and for patients and families affected by the pathology also known as Leber Hereditary Optic Neuropathy (LHON), with the purpose of becoming a point of reference for professionals, patients and their families.

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    ASEBI - Asociación Bizkaia Elkartea Espina Bífida e Hidrocefalia

    It was constituted as a non-profit association in 1986, and its scope of action is the Historical Territories of Bizkaia, Alava and Gipuzkoa. Its purpose is the protection at all levels of those affected by Rare Diseases (RD) to promote their social inclusion at all stages —care, health, training, employment— and to ensure their quality of life.

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    Asociación Bubbles and Dreams

    Non-profit association working for the benefit of children suffering from undiagnosed rare diseases. Our main objectives are: to help both children and their families, to promote research, to create a psychological and informative support group, to raise awareness of these diseases, to encourage the coexistence of sick and healthy children, to promote traditional and alternative therapies and to raise social awareness about this reality that is affecting more and more children every day.

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    ASTTA - Asociación Andaluza de Pacientes con Síndrome de Tourette y Trastornos Asociados

    It was created in September of 2000 by patients, family members, professionals and friends. The main reason was to have the opportunity to help this collective in Andalusia, although from the beginning patients from other parts of Spain have been included and people from other countries, mainly Spanish-speaking countries, are also assisted.

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    OPTIZC - Associació Síndrome Opitz C

    Our Association was established in 2006 with the main goal of providing visibility to the disease and to ensure the scientific research on this condition. Opitz C Syndrome is a rare genetic disease, with less than 60 cases diagnosed worldwide. Of these, two have been diagnosed in Spain (one in Asturias and one in Catalunya).

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    FEDER - Federación Española de Enfermedades Raras

    FEDER's mission is to represent and defend the rights of people with rare diseases and suspected diagnoses, aiding in their inclusion and creating strategies to help improve their quality of life. We wish to be a cohesive community within an environment with a common project, with a legitimate ability to influence social, healthcare and research proposals regarding rare diseases. 

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    ASANHEMO - Asociación Andaluza de Hemofilia

    It was created in 1990 as a non-governmental and non-profit association with the aim of providing support from a bio-psycho-social perspective to those affected by haemophilia and other congenital coagulopathies, carriers of the disease and their families. It also aims to promote their participation in all aspects of social life to achieve normalised, complete social integration.

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    Asociación Aprendiendo del Catch 22

    It is a non-profit association comprised of families and friends of children, teenagers and adults affected by 22q11.2 deletion syndrome (22Q). It is also known as Velocardiofacial syndrome, DiGeorge syndrome, Shprintzen syndrome and CATCH 22 (affectations in chromosome 22).

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    ENERCA - European Network for Rare and Congenital Anaemias

    It aims to provide a public health service to healthcare professionals and their patients in all aspects of rare anaemias. The strategic relevance is the involvement of healthcare professionals, patients, health authorities and other interested parties from all Member States in the design, validation and implementation of new eHealth services, aimed at improving the management of rare anaemias.

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    Ayuda GC - Asociación de Amigos y Familiares de Niños con Granulomatosis Crónica

    Ayuda GC is a small association that self-finances itself through fees and small donations. As a mutual help group for chronic granulomatous disease, we are part of bigger organisations: AEDIPE (Asociación Española de Déficits Inmunitarios) and FEDER (Federación Española de Enfermedades Raras).

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    VHL - Asociación española de familias de von Hippel-Lindau

    Associació Alianza Española de Familias de von Hippel-Lindau (Alianza VHL) was created in 2001 by three families affected by this disease with the aim of joining efforts to research and get a definitive cure or adequate treatment, as well as providing care, information and counselling to those affected and their families.

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    FARPE - Federación de Asociaciones de Distrofia

    Federación de Asociaciones de Distrofias Hereditarias de Retina de España, FARPE, is comprised of 11 associations nationwide that work to improve the living conditions of those affected by retinitis pigmentosa and other retinal dystrophies.

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    Asociación Síndrome Lesch - Nyhan España

    We wish to provide information and raise awareness of Lesch-Nyhan syndrome, a neuromuscular disease with terrible symptoms that has no cure for now.

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    AEDM - Asociación española de mastocitosis

    Asociación Española de Mastocitosis y Enfermedades Relacionadas brings solutions for people with Mastocytosis, their families and caretakers, and healthcare professionals. You can live a full life with mastocytosis, we can help you achieve it.

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    ACH - Associació Catalana Hemofilia

    It is a non-profit association that aims to carry out activities directly or indirectly related to congenital coagulopathies. It is the reference centre in Catalonia for the protection of the comprehensive health of people with haemophilia or other hereditary deficiencies of coagulation factors, both regarding health aspects as well as social and psychological aspects.

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    ACTMH - Associació Catalana de Trastorns Metabòlics Hereditaris

    It is a non-profit, volunteer association made up of parents of children who suffer from Phenylketonuria (PKU) and other metabolic disorders. It aims to provide psychological and social support for the families and fight for their well-being.

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    CEMMP - Asociación Comunidad Española de Pacientes con Mieloma Múltiple

    It is a non-profit association created by and for people who are affected by multiple myeloma. We work together so that all patients have access to the treatments they need, regardless of where they live. Once diagnosed, the person with multiple myeloma is not the only one affected. Their family and friends are their main support to start taking in the disease and have a good quality of life.

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    ACE - Asociación Conquistando Escalones

    Asociación Conquistando Escalones is made up of people affected by a rare, hereditary, genetic and degenerative disease called Limb-girdle Muscular Dystrophy 1F. The genetic mutation that causes it makes them immune to HIV and there is a large group of researchers worldwide working on finding a cure for them, which will help millions in the process. Its mission is to raise awareness as well as raise funds to keep medical research moving forward. 

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    Asociación Corea de Huntington de Castilla y León

    Asociación Corea de Huntington de Castilla y León is a non-profit organisation, created the 28th October of 2000, and its scope of action is Castilla y León. It is made up of people diagnosed with Huntington's disease, people at risk of suffering from the disease and family members and caretakers. They are joined by social and health professionals, volunteers and collaborators.

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    Asociación cuenta con nosotros Melilla. Enfermedades raras

    We are an association that provides information and support to people who suffer from a rare disease and their families. We manage the necessary resources so that these people can improve their quality of life in their fight against rare diseases.

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    FT - Fundació Privada Síndrome de Tourette

    The foundation helps in the diagnosis and treatment of people suffering from Tourette's Syndrome and offers support for their families, in the psychological, social, educational and cultural areas, in a comprehensive and inclusive manner, carrying out projects in the field of direct care, teaching, research, divulgation and social awareness.

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    FNP - Fundación Niemann Pick de España

    It is a charity and welfare non-profit organisation. It was created in Lleida in 2001 and is made up of Spanish families affected by the disease. Spain's Niemann-Pick Foundation is one of the founding organisations of the International Niemann-Pick Disease Alliance (INPDA), through which the International Neimann-Pick Disease Registry (INPDR) was created in 2014.

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    SM3 - Associació M3 Serveis Socials : Suport a les persones

    We are a non-profit, community organisation that aims to help various collectives of people who need support during specific moments such as women and children who have suffered from domestic violence, people with various disabilities, and elderly people who are in need of aid services.

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    NEXE Fundació

    We are an organisation that aims to improve the quality of life of children with multiple disabilities and their families, as well as to defend their rights. Throughout our history, we have created a network of innovative and pioneering services to help meet the needs of these children, encouraging their autonomy and socialisation. We also share our expertise by training other professionals, developing research projects and raising awareness among society.

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    ELA PRINCIPADO - Asociación de Esclerosis Lateral Amiotrófica Jovellanos del Principado de Asturias

    We are a non-profit association created in 2001 aiming to assist the specific needs of those suffering from Amyotrophic Lateral Sclerosis and their families. It has been declared a public utility organisation since 2006.

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    BENE - Asociación de Enfermos Neuromusculares de Bizkaia

    It is a non-profit association made up of families and patients affected by neuromuscular diseases in Bizkaia. It aims to be a reference and support point for all the people diagnosed with a neuromuscular disease in Bizkaia, as well as their families.

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    ASEM CLM - Asociación de Enfermos Neuromusculares de Castilla La Mancha

    We are a regional, non-profit association that aims to provide guidance, counselling and personal care to those affected by neuromuscular diseases and their families. Currently, NMDs have no cure, which is why it is essential for research to be carried out, as they are our hope for the future.

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    Asociación Chromo22

    Our association aims to fight against Neurofibromatosis type 2 by seeking to improve the quality of life of those affected. We have three main objectives: raise awareness about this disease in society, collaborate in the research of medical and pharmacological treatments, and promote medical and psychosocial support for patients and their families.

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    Mecp2 - Asociación Miradas que hablan

    The association "Miradas que Hablan" (Looks that Talk) has its name because of these children who cannot communicate through speech, many of them cannot communicate through gestures either. Jose Brocal and Ana Mourelo, Aitor's parents, committed to achieving these three objectives: research, broadcasting and union of the families.

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    LA LLAR - Associació Catalana d'Escleròsi Múltiple

    It is an association comprised of people affected by this chronic disease and other neurodegenerative diseases. It was created in 1987 aiming to improve the quality of life of those affected by multiple sclerosis and similar diseases.

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    REU+ - Lliga Reumatológica Catalana

    It is a non-profit association composed of people affected by one or more rheumatic diseases and their families and friends. For 30 years, it has been working to improve the quality of life, social inclusion and defence of the rights of this collective

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    ANPC - Asociación Nacional para Problemas de Crecimiento

    It is a non-profit association which aims to assist, at all levels, people with growth problems. It is comprised, essentially, of those who have children or family members with this issue, those affected and those interested, whatever the reason, in this cause.

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    ASEM Madrid - Asociación Madrileña de Enfermedades Neuromusculares

    It is a non-profit, regional association, declared of public utility. Its main objective is to achieve the best possible welfare for people affected by neuromuscular diseases, to improve their quality of life and that of their families, since this type of disease does not only affect the patient, but also everyone around them.

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    IHUCOR- Asociación Cordobesa para la Investigación del Corea de Huntington

    Share information about the disease, promote knowledge and research carried out in our country, and provide support to the families and patients affected.

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    FUNDAME - Fundación Atrofia Muscular Espinal

    It is a non-profit organisation created in 2005 by patients and family members affected by Spinal Muscular Atrophy (SMA). It aims to find a definitive cure for this disease and for those affected by SMA to have access to the treatments, cures and resources to live a full life completely integrated into society.

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    Asociación Nacional del Síndrome de APERT

    The association provides information about Apert Syndrome, as well as similar syndromes such as Crouzon's, Pfeiffer's and Saethre-Choz's.  Its main aim is to improve the quality of life of the affected and their social integration. Moreover, it also provides guidance regarding the available medical and care resources, encourages communication between affected families and promotes research about these symptoms and their distribution.

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    ALBI ESPAÑA - Asociación para la lucha contra las enfermedades biliares inflamatorias

    ALBI ESPAÑA is a non-profit association created on the 3rd of July of 2007 by people affected by inflammatory biliary diseases: Primary biliary cholangitis, Primary sclerosing cholangitis and Autoimmune hepatitis.

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    ACACI - Asociación Ciudadana de Afectad@s de Cistitis Intersticial/Síndrome del dolor vesical de España

    It is a non-profit patient association, with the mission of helping and counselling in a personal manner all those affected by IC or PBS throughout Spain to obtain a quick diagnosis and inform them of the possible treatments best suited to their condition, collaborating in reducing the wandering through different specialists and therapists, helping to guarantee access to diagnostic evaluation and treatments.

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    ACADIP - Associació Catalana de Dèficits Immunitaris Primaris

    ACADIP was born out of the need to come together and fight together to overcome the difficulties of immunodeficiencies as minority diseases, to try to raise awareness in society of their existence and to contribute to hospitals and research centres.

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    Associació Catalana de la Síndrome de Rett

    The association brings together parents with daughters affected by Rett syndrome with the aim of improving their quality of life and providing a meeting point to exchange experiences and mutual help. Our basic objectives are to offer shelter and help to families who have been diagnosed, to give visibility to this rare disease and its problems, and to promote any improvement in the treatment and care of Rett syndrome.

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    Asociación SYNDROM (Síndromes Genéticos Minoritarios)

    It is a non-profit association dedicated to rare syndromes that lead to disability. The project was created with the aim of finding those people affected by the less common and understudied genetic alterations, and who develop disabilities, and offering them guidance, support and information. Moreover, if the number of affected people is enough to create a specific association for their cause, the association will provide help and advice on how to do so.

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    ACAP - Associació Catalana per al Parkinson

    Associació Catalana per al Parkinson (ACAP) is a non-profit association that started in January 1985. Our mission is to provide care and counsel to those who suffer from Parkinson's disease and their families.

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    AAHP - Allied Health Professionals

    We are an independent union proudly representing allied health care professionals in Newfoundland and Labrador. Together, our members are committed to delivering the highest quality health care to help Make Life Better for individuals, families and communities throughout our province.

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    Associació d'Afectats de Siringomièlia

    Asociación de Afectados de Siringomielia is a group of patients who suffer from Syringomyelia. Syringomyelia is a disorder that affects our spinal cord. The origin is a cervical cyst that forms in our neck and produces, among other symptoms, headaches or loss of mobility in our arms.

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