The two meetings:

The Spring meeting

The spring meeting is an event in which Associations present good practices for their research experiences with rare genetic diseases.

The Meeting of the Telethon Friends Associations

The Telethon Friends Conference is an event organised to inform on the logic of scientific research and its tools like clinical trials, biobanks and epidemiological records. The scope is to move more and more towards a participatory, innovative and responsible scientific research, in line with European directives aiming at the active participation of the stakeholders. A unique occasion for the community of patients to be in contact with researchers and to train on research financing logics.