Fourth and final transnational meeting of the Erasmus+ YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE

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.