Fondazione Telethon ETS
Acronym: FTELE
General Information
Identification Code: 600735639422-31
Website: http://www.telethon.it
Entity Form: Fondazione
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 9/15/2020
Last Update: 3/27/2024
EP Accredited Number: 1
Mission & Interests
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 620 euro million funding over 2800 research projects involving more than 1600 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.
Interests Represented: Promotes their own interests or the collective interests of their members
Interests:
- Public health
- Research and innovation
Levels of Interest:
- global
- sub-national
- national
- european
Activities
Main EU Legislative Proposals: Regulation on orphan medicinal products - Indirect contact with the Commission through IRDiRC
Pharma strategy - indirect contact through the Alliance for Regenerative Medicine
Personalized medicine - indirect contact with the Commission through ICPerMED
implementing acts of HTA regulation
Communication Activities: Answer to public consultation on the EU pharma legislation and presented our statements in several conferences.
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: via Varese 16b
Post Code: 00185
City: Roma
Country: ITALY
Phone:
Indic Phone: 39
Phone Number: 06 440151
EU Office
Address: via Carlo Poerio 14
Post Code: 20131
City: Milan
Country: ITALY
Phone:
Indic Phone: 39
Phone Number: 02202217242
Financial Data
Closed Year:
Start Date:
End Date:
Funding Sources:
Contributions:
Total Budget: 0
Grants:
Current Year:
Grants:
Membership Information
Members10 Percent: 1
Members25 Percent: 1
Members: 2
Members F T E: 0.3499999940395355
Info Members: FT does not have an office in Brussels. However its staff is often involved in informal consultation with the EC on Rare Disease research policies and Orphan drug development. FT now has 1 person dedicated to Public Affairs whose main focus is on national policies; therefore the lobbying activities at EU level remain below 50% of his effort. In addition FT has a Regulatory Experts engaged in some EMA consultation and regulatory focused intiatives (10%).
Structure
Structure Type: Structure
Is Member Of: 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/
Organisation Members: 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/)
Current Job Opportunities
Research Trainee at Fondazione Telethon ETS
Fondazione Telethon ETS
internBrussels, BelgiumFull-time-time
Posted: 9/23/2025
mid-levelBrussels, Francefull-time
Posted: 8/21/2025