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

The association’s aims are:

  • To be a network for families with children with CNM: Families need accurate and up-to-date information about the disease. Challenges that come with having a child with CNM, research projects and future treatments.

  • To fight for access to therapies and/or trials: another highly important priority is to closely keep up with all the advances and participate in the available forums.

  • To improve care for children with CNM: we believe that there is still a lot of work to do to improve the daily lives of our children. One of our priorities is to try for them to receive at home and in the hospital all the care and services they need.

  • To create a CNM patient registry: knowing the exact number of children with MTM and CNM in Spain is a convenience that laboratories like when carrying out studies in our country.

  • Raising money for research: medical research needs a lot of money to carry out its tasks and giving funding to research centres is essential to be able to develop drugs and/or treatments.

  • Raising awareness about the disease: raise awareness about the existence of CNMs, and promote the development of new drugs in the scientific community. Participate in conferences, seminars, and interviews… and give visibility to the families.

To achieve these objectives, the association carries out the following activities:

  • Do and promote conferences, seminars, congresses, courses, workshops, talks, camps, cultural activities, etc. with the participation of professionals from some of the affected fields to raise awareness, train and help people with the disease and their families.

  • Public and private research, since it is responsible to find improvements that impact the quality of life of those affected, to develop studies and programmes more adapted to our needs. All profit is excluded.

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