KICK-OFF MEETING OF YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE

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The kick-off meeting of “YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE” was hold last Tuesday, March 29th, 2022. The online meeting, coordinated by Fundación Isabel Gemio, was attended by representatives of all the partner organizations of the project:

  • The Federación Española de Enfermedades Neuromusculares (ASEM) (Spain), a non-governmental organization that brings together associations and foundations for neuromuscular diseases. It currently represents more than 60,000 people affected throughout Spain.
  • Parent Project per la Ricerca sulla Distrofa Muscolare (Italy), an association of patients and parents with children affected by Duchenne and Becker muscular dystrophy.
  • Charcot-Marie-Tooth et Neuropathies Peripheriques (France), an association of patients with peripheral neuropathies, which aims to break the isolation by bringing together people with CMT or similar neuropathies.
  • Uniamo Federazione Italiana Malattie Rare (Italy) is the representative body of the community of people with rare diseases. It has over 150 member associations, which are constantly growing.

The project aims to give visibility to those young people who suffer from rare diseases, not only as a mechanism to recognize their value, but as an example that can inspire in values and good practices Besides other young people affected can learn to live with their disease and reach the highest levels of inclusion.

During the meeting, we presented the dissemination plan of the IGTV: YOUTH WITH COURAGE, the platform that will gather the inspiring testimonies of people with rare diseases, and the visual logo for the initiative. The partnership also planned the different strategies that we will follow to attract people’s attention and to engage them into the different initiatives. Partners also had the opportunity to share and exchange examples of good practices as the CMT France Congress, hosted recently in Saint-Malo (Britain), with nearly 400 hundred participants, or the summer camp organized every year by ASEM for children with neuromuscular diseases.

The first face to face meeting of the consortium is planned to be held on May, in Madrid, Spain.