YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE
KA2 – Agreement Number: 2020-3-ES02-KA205-016190
The Isabel Gemio Foundation has achieved the financing of this European project that will coordinate in the next months and in which the following European partners participate:
- UNIAMO FEDERAZIONE ITALIANA MALATTIE RARE (Italy)
- PARENT PROJECT PER LA RICERCA SULLA DISTROFIA MUSCOLARE – ASSOCIAZIONE DI PROMOZIONE SOCIALE (Italy)
- ASSOCIATION CHARCOT-MARIE-TOOTH ET NEUROPATHIES PERIPHERIQUES (France)
- FEDERACIÓN ESPAÑOLA DE ENFERMEDADES NEUROMUSCULARES (ASEM) (Spain)
Creation of a European network of European foundations, institutions, and entities in order to promote the exchange experiences and good practices, but also collaborate together to create IGTV: YOUTH WITH COURAGE.
– The approach and joint work between entities from different European countries that share their ideas and spread their actions among the rest of the network to provide them with more capability for European vision.
– The creation of a project website on Instagram where the IGTVs: YOUTH WITH COURAGE will be included, with information on the project, itinerary, and updated results.
– The creation of the IGTVs: YOUTH WITH COURAGE: Small video interviews (no more than 5 minutes) with young people with rare diseases who tell their day-to-day and show users how to overcome their barriers. Short videos of scientists, families who contribute effectively to research, or people important to advance rare disease research may also be included. These videos can consist of videos recorded by the youth people or families themselves. They can be recorded in the native language of the protagonist with subtitles or in English.
– A dissemination campaign on social networks or even on the media that will publicize the results of the project and the importance of supporting the rare disease research.
Outcomes and Impact
The results will include a set of audiovisual resources that show the lives of exceptional young people 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 young people who suffer from rare diseases or not. This will be a dynamic result as young people suffering from rare diseases will be able to create their own videos by becoming part of IGTV: YOUTH WITH COURAGE.
Target audience: Young people.