Collaboration, participation, and sharing to improve the lives of people affected by a rare genetic disease and move forward together toward a cure.
Ever since it was founded, Fondazione Telethon has collaborated with associations of people affected by rare genetic diseases. Created at the initiative of patients and their families, the Network of Associations of Fondazione Telethon (AIR) helps accelerate research toward cures for genetic diseases by promoting patient education and active participation, increasing public awareness and understanding of rare genetic conditions, and fostering connections and exchanges among people who share similar experiences.
To date, 292 Italian Patient Organizations have chosen to join the Network of Associations, sharing the same values and goals.
What does it mean to become a member of the Network?
The Network is not a federation, and therefore there are no membership fees. It is a solidarity-based network built on exchange and collaboration.
Being part of it allows an Italian Association to:
- Have a direct and ongoing communication channel with Fondazione Telethon;
- Join projects promoted by Fondazione Telethon specifically for Italian Associations;
- Receive expert advice on scientific research (basic research, clinical trials, compassionate use of drugs, regulatory aspects, etc.);
- Participate in training and networking events;
- Promote its own initiatives in the online event calendar;
Request the patronage of Fondazione Telethon for scientific events.
Our Initiatives
Seed Grant
The project was created to make our expertise in the merit-based evaluation of research projects available, enabling associations to make the best use of the funds they raise to support the study of rare genetic diseases.
WebinAIR online
The WebinAIR project is a series of single-topic webinars designed for the Associations in the Network, giving them the opportunity to explore and deepen their understanding of relevant and useful topics.
ON AIR
ON AIR is our format that shares stories of commitment, perseverance, and collaboration from the Associations in the Network, told through the words of their representatives.
If you want to learn more about other AIR initiatives, visit the page in Italian: Le Associazioni in rete | Telethon
