YOUTH WITH RARE DISEASES: THE STRENGTH OF FACING LIFE Erasmus Project

Project Title

YOUTH WITH RARE DISEASES: THE STRENGTH OF FACING LIFE

Project Key Action

This project related with these key action: Cooperation for innovation and the exchange of good practices

Project Action Type

This project related with this action type : Strategic Partnerships for youth

Project Call Year

This project’s Call Year is 2020

Project Topics

This project is related with these Project Topics: Inclusion – equity; Youth (Participation, Youth Work, Youth Policy) ; Disabilities – special needs

Project Summary

A rare disease forces the person who suffers from it -especially if they are young- to daily efforts, a constant enthusiasm, and continuous learning. The high barriers that these people must overcome daily to carry out any activity are an act of courage and heroism, but they are also an example for all young persons in their same situation, who will learn to overcome them more easily.

The project “YOUNG PERSONS WITH RARE DISEASES: THE VALUE OF FACING LIFE” will be an initiative aimed to raise awareness towards those young persons who suffer from rare diseases, not only as a mechanism to recognize their value, but also as an example of good practices, so that other youth in their situation can learn to live with their disease and reach full inclusion.

To accomplish this, we propose the creation of a European network of foundations, institutions, and entities, to exchange experiences and good practices, but also collaborate to promote learning and training for youth in general -especially young persons with rare diseases, but not only them- through an innovative peer learning methodology in which youth with and without obstacles are the promoters and protagonists.

To achieve this, the project proposes the creation of a strategic partnership of entities with great impact capabilities, significance, and media relevance, encompassing entities like FUNDACIÓN ISABEL GEMIO and FEDERACIÓN ASEM (both from Spain), UNIAMO FEDERAZIONE ITALIANA MALATTIE RARE and DUCHENNE PARENT PROJECT ITALIA (Italy) and CMT-FRANCE (France), who will work along with their beneficiaries, public institutions, and experts to create an innovative and digital training strategy for youth based on IGTV resources and videos created by the beneficiaries and experts themselves: IGTV – YOUTH WITH COURAGE.

This result will be a set of audiovisual resources showing the lives of exceptional young persons who overcome the barriers imposed by their rare diseases every day, not only recognizing their value, but also serving as an example of improvement to other youth suffering from rare diseases. This will be a dynamic result, because in addition to the young persons linked to the partner entities, other non-associated young persons suffering from rare diseases will benefit from the project and will be able to take part in it by creating their own videos, becoming part of IGTV – YOUTH WITH COURAGE.

These videos will be the basis for a dissemination campaign through social networks and the media, to promote awareness, inclusion, and investment in the research on rare diseases as the best way to recognize the value and effort of young persons suffering from them.

To carry out all of this, multiple and diverse activities will be carried out during 24 months, in which the young participants themselves will have a leading role. From 4 transnational meetings (Spain-France-Italy-Spain), to multiple national activities to develop the videos, dissemination and awareness activities, evaluation activities, bilateral meetings with collaborating entities…

We believe that thanks to the dissemination and impact capabilities of the partner entities, and their close relationship with the media, public administrations, health centers, and beneficiary associations, this partnership will allow to raise awareness towards a reality usually unknown to youth in general, while developing the social, digital, cultural, and citizenship competences of both youth with and without special needs and the youth technicians who work with them, who will get to know a reality that is generally not known to them, improving their work and volunteer practices

EU Grant (Eur)

Funding of the project from EU: 49250 Eur

Project Coordinator

FUNDACIÓN ISABEL GEMIO & Country: ES

Project Partners

• UNIAMO FEDERAZIONE ITALIANA MALATTIE RARE
• Parent Project per la ricerca sulla distrofia muscolare – Associazione di promozione sociale
• Association Charcot-Marie-Tooth et neuropathies périphériques
• Federación Española de Enfermedades Neuromusculares