First transnational meeting of the initiative YOUNG WITH RARE DISEASES: THE VALUE OF FACING LIFE

The first transnational meeting of the initiative YOUTH WITH RARE DISEASES, co-financed by the Erasmus+ Programme of the European Union, was held yesterday, May 26th, in Madrid, with the participation of:

  • Fundación Isabel Gemio
  • La Federación Española de Enfermedades Neuromusculares (España)
  • Parent Project per la Ricerca sulla Distrofa Muscolare (Italia)
  • Charcot-Marie-Tooth et Neuropathies Peripheriques (Francia)
  • Uniamo Federazione Italiana Malattie Rare (Italia)

Firstly, the participants met at Fundacion Isabel Gemio to analyse the progress so far and to continue with the development of the project. After the presentation of the main results of the IGTV: YOUTH WITH COURAGE, the partners agreed to develop new dissemination actions and to design different evaluation activities to measure its impact. Besides, it was decided the date of the second transnational meeting, which will take place in Toulouse in July.

Afterwards, the partners had the opportunity to talk to one of the protagonists of the initiative, Mikel Villanueva, who shared his experience within the project. Mikel, who suffers from Spinal Muscular Atrophy Type 2, is 22-year-old. He combines his studies at the University with his new job in a pharmaceutical company. One of his great passions is wheelchair hockey. In fact, he will travel to Switzerland this summer to play the World Championships. Mikel also shared his insight on the representation of rare diseases on social media.

Once the meeting was over, the members enjoy the catering offered by SECOE, which has joined the initiative to help give visibility to young people suffering from rare diseases. During the break, the partners continue to share experiences and strengthen ties. At all times, the entities showed their willingness to establish a collaboration network that will allow the development of initiatives on an international scale.

The day ended with a meeting with the second vice-president of the Congress of Deputies, Dña. Ana Pastor, accompanied by the spokespersons for Health and Social Rights of the Popular Parliamentary Group, Elvira Velasco and Alicia García, who listened attentively to the objectives of the initiative. They also highlighted the importance of research and commented on some of the latest breakthroughs. They recognised that there is still much to be done and that it is necessary to continue working hard to improve the reality of people affected by rare diseases and their families.

The meeting was joined by the President of the Foundation, Isabel Gemio, who advocated for the visibility of rare diseases and outlined some ideas that she hopes to put into practice to continue helping research. She also thanked the help and support of Dr. Ana Pastor, who has always shown her concern and who is fully aware of the situation of rare diseases. They maintained their commitment to continue cooperating in order to help to advance research and to raise awareness of these pathologies.


The initiative YOUNG PEOPLE WITH RARE DISEASES is co-funded by the Erasmus+ Programme of the European Union.