Lobby organisation
EUROPEAN ORGANISATION FOR RARE DISEASES
NGO or non-profit · Health & pharma · HQ: France · Transparency Register entry
As of 7 November 2026, EUROPEAN ORGANISATION FOR RARE DISEASES appears in 56 declared MEP meetings (29 different MEPs), most often with European People's Party.
In their own words
“EURORDIS-Rare Diseases Europe is a patient-driven alliance of over 1130 patient organisations (POs) active in the field of rare diseases (RD) from 77 countries. It represents the voice of an estimated 30 million citizens in the EU.”
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“By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. EURORDIS vision is to enable better lives and cures for people living with a rare disease and its mission is to work across borders and diseases to improve the lives of people living with a rare disease. To this end, EURORDIS-Rare Diseases Europe undertakes activities on behalf of its members: • Raising public awareness on RD • Empowering PLWRD and RD patient groups and strengthening the capacity of rare disease patients’ representatives • Advocating for RD as a public health priority and for national and EU-level […]”
Stated goals from the organisation's own Transparency Register filing - the text on file breaks off mid-sentence where marked […].
Who they meet, and when
Which groups they meet
Share of this organisation's 56 declared meetings, by the meeting MEP's political group.
Meetings by year
Declared meetings per calendar year, 2021–2026. Bar length is relative to its busiest year (30 in 2024). 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 15 most recent declared meetings
| Date | MEP | Subject |
|---|---|---|
| 14 Jul 2026 | Vytenis Povilas Andriukaitis | Rare Diseases |
| 18 May 2026 | Vytenis Povilas Andriukaitis | Biotech Act |
| 2 Apr 2026 | Nicolás González Casares | Rare Diseases |
| 17 Mar 2026 | Elena Nevado del Campo | INL Rare Diseases |
| 3 Mar 2026 | Nicolás González Casares | Rare Diseases |
| 28 Jan 2026 | Stine Bosse | Rare diseases |
| 13 Jan 2026 | Vytenis Povilas Andriukaitis | Exchange of views |
| 12 Jan 2026 | Vytenis Povilas Andriukaitis | Coordination call |
| 6 Nov 2025 | Nicolás González Casares | Rare Diseases |
| 5 Mar 2025 | Isabel Wiseler-Lima | Rare Disease Day |
| 15 Jan 2025 | Vlad Vasile-Voiculescu | Intergroup on cancer and rare diseases |
| 5 Dec 2024 | Stine Bosse | European health policy |
| 20 Nov 2024 | Margarita de la Pisa Carrión | Enfermedades Raras |
| 20 Nov 2024 | Victor Negrescu | EU health policies and EU budget |
| 20 Nov 2024 | Adam Jarubas | Sytuacja pacjentów chorób rzadkich w UE - Europejski Tydzień Chorób Rzadkich w Brukselii |
Meeting an MEP is a normal part of democratic life; the record is shown so anyone can see it.