The Erasmus+ YOUNG PEOPLE WITH RARE DISEASES held its 4th and final transnational meeting in Barcelona on January 23rd. The partnership discussed the results and analysed the all the activities carried out within the project.

The initiative YOUTH WITH COURAGE has shared a total of 28 videos with the testimonies of young people affected by rare diseases and muscular dystrophies. Fundación Isabel Gemio, as coordinator of the Project, presented the final report analysing the impact on social media. The videos got more than 10k views in total on the different social media profiles of the initiative YOUTH WITH COURAGE (Instagram, Youtube, Facebook and Twitter). Besides, all the posts related to the project amounted to more than 9k impressions.

From the evaluation questionnaire developed by the partnership to analyse the impact of the project we have drawn the following conclusions:

• All the respondents agree that this kind of initiatives benefits people suffering from rare diseases. They also affirm that they have learnt values such as courage and empathy, the importance of research and how to overcome difficulties while watching the videos.
• As to the question concerning inclusiveness, they point out that it is important to carried out similar initiatives to YOUTH WITH COURAGE to continue raising awareness among society. Also, they consider that it is necessary to increase the funding and training of society regarding rare diseases.

During the meeting, it was agreed to prepare a 2nd newsletter to inform organizations and institutions of the results of the second half of the project. It was also agreed to gather all the information of the project in a brief guide that will be available soon.

All the organizations involved in the project (Fundación Isabel Gemio, Federación ASEM, UNIAMO, Parent Project APS y CMT-France) would like to thank the protagonists of the initiative YOUTH WITH COURAGE for their willingness and collaboration. During these months, we have learned about their lives, their diseases, their friends and families, their biggest obstacles and their biggest dreams. Moreover, they have set an example to young people and society with their value to face life. We would also like to thank Perez Llorca law firm for welcoming us and for their amiability, and all the people that have supported us in the different stages of the project.

Ultimately, the partnership concluded that the project has been a very positive and enriching experience for all the organizations, and it committed to continue working as a team in similar initiatives. The project YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE is co-funded by the Erasmus+ programme of the European Union.

The Erasmus+ THE VALUE OF FACING SCHOOL held its first transnational meeting in Rome on October 24^th, 2022. The meeting room was placed at the Telethon Fondazione’s office, which it’s one of the entities that support the research of rare diseases in Italy and Europe. 

During the meeting, the partnership reviewed the progress of the methodological guide INCLUSION AND EQUITY IN SCHOOL that will focus on topics such as digitalization, inclusive pedagogies, and collaborative working methods. Aiming to make a change in educational methods to students with rare diseases, this guide will offer a complete overview of the situation in the different countries involved in the initiative.

Similarly, the partnership will develop a set of Open Educational Resources that will help teachers to create an inclusive environment; allow students to identify the barriers that face children with special needs; and provide parents with new mechanisms to communicate with the school board.

The partnership has also developed a web platform for the project, and has created profiles on Instagram and Facebook, to share the latest news of the initiative. Follow us to know more information about it.

This initiative is co-funded by the European Union.

• 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.