Patient Associations are vital networks of families who advocate for the needs and rights of all individuals living with rare diseases. They act as representatives of the patient community, working to foster biomedical research aimed at identifying and developing new potential therapies.
To ensure that resources are invested in the most promising research, it is crucial to minimize the risk of dispersing funds on projects lacking scientific merit. In 2019, to address this need, Fondazione Telethon launched the Seed Grant initiative, designed for Patient Associations willing to invest a limited budget in an exploratory research project. Through this program, we provide our expertise by applying a rigorous peer-review process to identify projects truly worth supporting.
At a glance (2019-2025)
The initiative begins with a national call dedicated to a specific rare genetic disease. Submitted proposals are evaluated by an international Scientific Committee established ad hoc, with the task of selecting projects of the highest scientific quality and with the strongest potential to advance therapeutic development. At the end of the review process, the shortlisted projects are presented to the Patient Associations, who make the final decision on which project to fund.
Beyond selection, we continue to support Patient Associations by monitoring the progress of the funded projects, ensuring transparency and accountability while maximizing the impact of their investment in research.
