Fondazione Telethon ETS
Budget
€25 — €0
EP Access
0
accredited persons
Staff
3
0.45 FTE
EU Grants
None
Mission & Goals
Telethon Foundation is an Italian non-profit organization that has been supporting bio-medical research on rare and genetic diseases for more than 30 years. The vision of the Telethon Foundation is to translate research results into therapies available to patients. Telethon, besides being an Italian organization, is committed to treat any patient in the world affected by a rare genetic disease and believes that fighting genetic diseases is a worldwide challenge. Over the years Telethon Foundation has invested more than 740 euro million funding over 2800 research projects involving more than 1900 scientists. Every year Telethon Foundation launch a call for projects in the field of RD research open to all Italian not for profit research centers. Moreover Telethon runs 2 research institutes, the Telethon Institute for Genetic Medicine (TIGEM) and the San Raffaele Telethon Institute for Gene Therapy (SR‐Tiget). In 2023 FTELE became the Marketing Authroization Holder of Strimvelis.
EU Legislative Interests
Critical Medicine Act Pharmaceutical Package Life science strategy implementing acts of HTA regulation Biotech act
Communication Activities
Answer to public consultation on the EU pharma legislation and presented our statements in several conferences. March 2025: participation in an event on Rare Diseases hosted by MEP Stine Bosse.
Interests Represented
Promotes their own interests or the collective interests of their members
Member Of
Fondazione Telethon is member of: - IRDiRC (https://irdirc.org/) - ICPerMed (https://www.icpermed.eu/) - ARM (https://alliancerm.org/) - Treat-NMD (https://treat-nmd.org/) - ENMC (https://www.enmc.org/)
Organisation Members
Fondazione Telethon does not have any member however it runs an informal network of patients associations called "Associazioni in Rete"; the full list is available at this link: https://www.telethon.it/cosa-facciamo/supporto-alla-ricerca-e-ai-pazienti/supporto-ai-pazienti/associazioni-amiche/lelenco-delle-associazioni-amiche/
Additional Information
In 2025 the EU lobby activity is carried out in collaboration with the consultancy firm Cattaneo Zanetto Pomposo & Co.
Commissioner Meetings
No recorded meetings with EU commissioners.