Lobby organisation
Fondazione Telethon ETS
NGO or non-profit · Think tanks & research · HQ: Italy · website · Transparency Register entry
As of 7 November 2026, Fondazione Telethon ETS appears in 6 declared MEP meetings (5 different MEPs), most often with European People's Party.
In their own words
“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.”
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“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.”
Stated goals from the organisation's own Transparency Register filing.
Who they meet, and when
Which groups they meet
Share of this organisation's 6 declared meetings, by the meeting MEP's political group.
Meetings by year
Declared meetings per calendar year, 2023–2026. Bar length is relative to its busiest year (3 in 2025). Hatched: 2026 is a part-year - the record runs to 6 Nov 2026.
Group is each MEP's current political group, not necessarily the one they sat with at the time. Shares are rounded to whole percent.
The MEPs they meet most
The 6 most recent declared meetings
| Date | MEP | Subject |
|---|---|---|
| 16 Oct 2026 | Elena Nevado del Campo | Rare diseases action plan |
| 22 May 2025 | Tomislav Sokol | Health policy |
| 22 May 2025 | Ondřej Knotek | Rare Diseases |
| 21 May 2025 | Vlad Vasile-Voiculescu | Introductory Meeting |
| 17 Jan 2024 | Brando Benifei | Discussion on initiatives on rare diseases issues |
| 25 Oct 2023 | Brando Benifei | Discussion on rare diseases |
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