YOUTH WITH RARE DISEASES: THE STRENGTH OF FACING LIFE

Background A rare disease forces the person who suffers from it, especially if he/she is young, to strive daily, to maintain their hopes constantly, and to carry out continuous learning. The high barriers that these people must overcome every day to carry out daily activities are an act of courage and heroism, and an example for the rest of young people in their situation, who can learn from those who go through or have gone through the same thing as them to overcome them more easily. But in most cases, these young people suffering from rare diseases cannot show their lives easily, nor their example of overcoming the odds, to others who might need a boost of encouragement in theirs. This is the need that we detected and wanted to address with this project: the need to provide a longer reach to young people with rare diseases, by offering them a loudspeaker so they themselves can reach others in their same situation with their experiences, and also people who, despite not suffering from them, can learn from it. Objectives This project was proposed as an initiative with the aim of providing visibility to young people who suffer from a rare disease, not only as a mechanism to recognize their valor, but above all so that they themselves act as an example of good practices, so other young people in their situation can learn to live with their disease and reach the highest levels of inclusion. Thanks to the dissemination and impact capabilities of the entities promoting this project, the partnership has managed to raise the awareness of several sectors about a reality usually unknown to young people in general, while developing the social, digital, cultural, and citizenship skills of both young people with rare diseases and those who do not suffer from them, along with the youth technicians who work with them. This allows them to know their reality and improve their work or volunteering practices, managing to improve the social inclusion of young people with these rare diseases, promote their involvement, connection, and empowerment, and encourage the quality, innovation, and recognition of work in the field of youth, thus improving their knowledge about this group. Implementation During the 24 months of the project, the partnership has carried out a wide range of activities along with young people with rare diseases, in which they themselves have played the leading role: the multiple national activities for the creation of videos with testimonies of young people with rare diseases “YOUTH WITH COURAGE”, dissemination and awareness activities, evaluation activities, the 4 Transnational Meetings held (two in Spain, one in France, and one in Italy), bilateral meetings with collaborating entities (non-formal partners), etc. This European network of foundations, institutions, and entities has exchanged experiences and good practices, in addition to collaborating together in the promotion of the learning and training of young people in general, especially of those suffering from rare diseases, but also managing to improve the awareness of European citizens in general. Achievements To achieve these objectives, the project solidified a strategic partnership of entities with great impact, transcendence, and media capabilities, encompassing FUNDACIÓN ISABEL GEMIO and ASEM (from Spain), UNIAMO and PARENT PROJECT (from Italy), and CHARCOT-MARIE-TOOTH (from France). These entities have worked along with their beneficiaries, other institutions, and experts to create the videos and resources developed with the beneficiaries themselves as protagonists, the “VIDEOS: YOUTH WITH COURAGE", as well as several NEWSLETTERS and a GUIDE. This set of audiovisual resources shows the lives of exceptional young people who overcome the barriers imposed by their diseases every day, not only recognizing their courage, but serving as an example of achievement for other young people who also suffer from them. These videos are a dynamic result that also allows other young people with rare diseases who are not part of the partner entities to benefit from the project, by being a part of it with their own videos. Also noteworthy are the learning and empowerment results of young people with rare diseases, which have been registered in the Youthpass certificate.