A network of partners to make progress together towards finding a cure for rare genetic diseases.
Ever since it was founded, we've always worked with leading rare disease patient organisations. Set up by patients and their families, these groups contribute to speeding up research towards a cure for genetic diseases, while at the same time raising awareness about the disease, fostering contact and the sharing of information among people in similar situations.
To date, over 200 Patient Organisations are part of Telethon’s network Associations, all of which share the same values and goals.
What does becoming a Telethon Partner Association mean?
The network is not a federation, therefore there are no membership fees. Through the network Associations can:
- have a direct and continuous communication channel with Telethon.
- be included in invitations to take part in events organised by Telethon.
- request the patronage of Telethon for their scientific events.
- receive advice about scientific research and the biobank network.
- give visibility to their associative meetings on the on-line Calendar
Genetic disease patient associations can apply to join the network by sending an email to [email protected]; applicants will receive a questionnaire to be filled in and returned with a copy of the statute.
Would you like to set up a rare disease patient association? We can help you! Each year sees the birth of new communities of people sharing the same rare genetic disease who decide to set up an organisation. We provide information and contacts with the world of research to help those who decide to take this road. In addition to this type of support, we can also place new associations in contact with others that already have experience in the field that can guide the new group as it finds its feet.
We organise two informative meetings every year: the Partner Associations Meeting and the Convention of Patients Associations during the Telethon Scientific Convention. Their aim is to disseminate a culture of scientific research into rare genetic diseases and empower patients and patient associations so that they can become priority partners for researchers and regulators.