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Since its inception, gene therapy has long attracted worldwide attention due to its potential to cure diseases at one time. While bringing hope of cure to patients with rare diseases, it has also continuously broken the record of "the world's most expensive drug".
Rare health disorders affect 7.2% of the Swiss population. More research and treatments are needed. Patients and the medical profession are fighting to change that.
A study carried out by Rare Disease Ireland states that resources for genetic services need to be increased and reveals that a lack of awareness of rare diseases, particularly among general practitioners and emergency physicians, is one of the reasons for delayed diagnosis.
Agenda Patient73 |
The X International Congress on Fabry Disease will be held on June 16 and 17. The event is organized by the association MPS Lisosomales España, and has the collaboration of the Fabry International Network and AECOM&Sociedad.
El proper 7 de juny a les 15h se celebrará a l’UPC l’acte de clausura i entrega de premis de la primera edició de la Patient73 GameJam per les Malalties Minoritàries.
Last Friday, May 19th, the Hospital Clínic of Barcelona hosted the Clínic’s Rare Diseases Program Day, an event that focused on the role that patient associations play in supporting families affected by rare diseases as well as on the existing synergies with health professionals and researchers.
May 20 is the International Behçet's Awareness Day, discovered in 1937 by Dr. Hulusi Behçet. This day is celebrated with the aim of raising awareness in society, disseminating information about this pathology and supporting people who suffer from it.
Neurofibromatoses are a group of genetic disorders that cause tumors to grow on nerves throughout the body, causing serious health problems, pain and damage to nearby tissues. For this reason, May 17 is celebrated as NF Awareness Day.
International MPS Awareness Day is celebrated on May 15. This annual celebration serves to give visibility to mucopolysaccharidoses (MPS) and the people who live with these disorders. It is a day that aims to educate and raise awareness about the diagnosis, symptoms and treatment of MPS.
We already know who the winners of the Patient73 GameJam for Rare Diseases 2023 are! From Patient73 and FECAMM we want to congratulate the winners and thank everyone for their participation.
EURORDIS is holding the EURORDIS Membership Meeting in Stockholm from the 25th to the 27th, an event that brings together more than 200 patients, patient organizations, policy makers and other stakeholders for networking and capacity-building workshops to improve the lives of those living with a rare disease.
Under the theme of 'Digital Toys', the Patient73 GameJam has been organized with the aim of helping to raise awareness and understanding of the world of rare diseases through the innovative power of digital games.
Today, Friday, April 28th, is celebrated the International Undiagnosed Day. Often, when talking about rare diseases, people without diagnosis are still forgotten, so it is important to claim the existence of this group and keep fighting for them to have the same rights as people with a rare disease, a cancer or any other disabling disease.
The 29th edition of the International Working Conference on Requirement Engineering: Foundation for Software Quality was held in Barcelona on April 17, 18, 19 and 20. Francesc Cayuela, president of FECAMM and Patient73 Foundation gave a conference to present the Patient73 project.
On 17 April 2023, during the Swedish Presidency of the European Union, a wide range of delegates – policy makers, healthcare professionals and representatives from patient associations, health authorities, media, academia, life science, and the tech industry - will gatherin Stockholm for the Nordic Rare Disease Summit 2023.
The EMA (European Medicines Agency) has presented the annual summary of patient and healthcare professional involvement in the agency's work last 2022.
Pharmafile has published an interview with Giacomo Chiesi, Head of Global Rare Diseases at the Chiesi Group, to discuss the challenges faced when studying and treating rare diseases, as well as his hopes for the future of rare disease research.
The European Medicines Agency (EMA) plays a central role in facilitating the development and authorisation of medicines for rare diseases, which are termed 'orphan medicines' in the medical world. Sponsors of designated orphan medicines can benefit from a number of incentives in the EU.
In recent years, significant advances have been made in the field of rare diseases (RDs). However, there is a large number of RDs without specific treatment and half of these treatments have public funding in Spain.
Aquest passat 28 de febrer, en motiu del Dia Mundial de les Malalties Minoritàries, s’ha celebrat l’acte d’inauguració de la Patient73 GameJam.
