• Mina lives with a rare disease called DiGeorge’s syndrome or velo-cardio-facial syndrome. When she was a teenager, she was also diagnosed with scoliosis idiopathic.
• Mikel, 22 years old , has a degenerative neuromuscular disease, called Spinal Muscular Atrophy Type II.
• Alex is the administrator and regional delegate for the association CMT France, which helps patients suffering from Charcot Marie Tooth disease, the disease he also suffers..
• Alicia is a young woman of 22 years old who suffers from muscular dystrophy. Her mother points out that society doesn’t worry about rare diseases or muscular dystrophies, and she ask for bigger support.
• Samuele, 21 years old, studies Mechanical Engineering at La Sapienza and is passionate of hockey. He also suffers Duchenne muscular dystrophy (DMD).

The initiative, co-funded by the Erasmus+ Programme of the European Union, aims at the creation of a European network of European foundations, institutions, and entities in order to promote the exchange of experiences and good practices. The partners of the initiative are:

• Fundación Isabel Gemio (Spain)
• Federación Española de Enfermedades Neuromusculares (Spain)
• Parent Project APS per la Ricerca sulla Distrofa Muscolare (Italy)
• Charcot-Marie-Tooth et Neuropathies Peripheriques (France)
• Uniamo Federazione Italiana Malattie Rare (Italy)

The kick-off meeting of ‘THE VALUE OF FACING SCHOOL: THE INCLUSION OF YOUTH WITH NEUROMUSCULAR DISEASES, MUSCULAR DYSTROPHIES AND OTHER RARE DISEASES IN EDUCATION’ was hold last Wednesday, June 22^nd, 2022. The online meeting, coordinated by Fundación Isabel Gemio, was attended by representatives of all the partner organizations of the project:

• Universidade de Évora (Portugal), a center for the creation, transmission and diffusion of culture, science and technology, which, through the articulation of study, teaching and research, is integrated into the life of society.
• Fondation Maladies Rares (France), which has the French legal status of “Scientific Cooperation Foundation”, a private non-profit legal person, promotes research projects and scientific excellence, as well as the sharing and dissemination of knowledge in the field of rare diseases.
• Federación Española de Enfermedades Neuromusculares (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.
• Uniamo Federazione Italiana Malattie Rare (Italy), the representative body of the community of people with rare diseases. It has over 150 member associations, which are constantly growing.
• C.E.I.P. Clara Campoamor de Málaga (Spain), an early age and primary public school of bilingual education that uses research, experimentation and educational innovation as a fundamental element of teaching practice.

The main objective of the project THE VALUE OF FACING SCHOOL is to create a partnership for cooperation, improving the quality of the work, activities and practices of the organizations and institutions involved. Besides, it should develop the capacity of the organizations to work transnationally and across different sectors, to address common priorities and needs, and to make a change in educational methods to students with muscular dystrophies.

During the meeting, Fundación Isabel Gemio explained the different phases of management and implementation of the project. The partnership will develop two main intellectual outputs: a DIGITAL METHODOLOGICAL GUIDE that will decisively help the school and the teachers to meet the educational needs of students with muscular dystrophy and other rare diseases; and a set of DIGITAL OPEN EDUCATIONAL RESOURCES (OERs) adapted to the beneficiaries and developed by experts, that really contribute to developing the educational competences of students with muscular dystrophy and other rare diseases. The project will end with the celebration of a MULTIPLIER EVENT in which the main results of the initiative will be presented to the beneficiaries themselves, and to social entities, policy makers, and scientific experts, as well.

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

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.