The Erasmus+ YOUNG PEOPLE WITH RARE DISEASES met in Rome on October 24th for the third transnational meeting of the project. The partnership analyzed the progress and coordinated the following steps.
First, the participants reviewed the statistics of the IGTV: YOUTH WITH COURAGE. The audience in the different social media profiles has increased considerably since the last meeting. It was decided that the online questionnaire that will measure the impact of the initiative will be launched in November, along with the sustainability campaign that will allow people suffering from rare diseases to share their own stories with the hashtag #youthwithcourage.
Later, Stefano Benvenuti, Public Affair Manager of Telethon Italy, joined the meeting to explain the partnership the main lines of research supported by the Telethon Fondazione and the principal activities carried out to fund the investigation of genetic diseases. “Funding research is not enough: we want to turn the results of excellent scientific research into treatments that are accessible to all patients. Because everyone has the right to a cure”, he claimed.
Samuele, one of the protagonists of the initiative IGTV: YOUTH WITH COURAGE, also joined the meeting to share his experience with the partnership. “I really enjoyed participating in this project because the interview led me to reflect about my life and my values”, he explained. “I hope that the interview helps people to understand the positive and negatives things of my life”, he added.
The initiative YOUNG PEOPLE WITH RARE DISEASES: THE VALUE OF FACING LIFE, is co-funded by the Erasmus+ programme of the European Union.