A network of collaborations to progress together towards the cure of rare genetic diseases.

The Fondazione Telethon has been working since its foundation with the leading organisations of people with rare diseases. Born thanks to the will of patients' and their families, they contribute to speeding up research towards curing genetic diseases, while simultaneously raising attention to the issue and promoting the contact and exchange among people who share similar situations. To date, over 190 Patient Organisations have decided to join the friend Association network that shares the same values and scopes.

What does it mean to become a Telethon Friend Association?

The network is not a federation, therefore there are no membership fees to pay. They allow the Association to:

have a direct and continuous communication channel with the Fondazione Telethon

be included in invitations for training events organised by the Fondazione Telethon

request the patronage of the Fondazione Telethon for its scientific events

receive advice on scientific research and on the biobank network

give visibility to their associative meetings on the on-line Calendar

The informative events

The Fondazione Telethon organises two informative meetings every year with the scope of spreading an empowerment and a scientific research culture on rare genetic diseases among patinets and patient organisations so that they can become primary interlocutors for researchers and regulators. Two meetings alternate every year: the spring meeting anf the Telethon Friend Association Conference.  

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Would you like to set up an association for rare diseases? We can help you!

Each year new communities of people are born sharing the same rare genetic disease and that decide to start an organisation. Fondazione Telethon provides information, contacts with the world of research and the basic legal documents to help who has decided to take this road. Besides this type of support, Fondazione Telethon offers also the possibility to come into contact with organisations that have a consolidate experience and that can act as a guide in accompanying the birth of a new reality.

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A network of collaborations to progress together towards the cure of rare genetic diseases.