MEP of the week

Lobby organisation

EUROPEAN ORGANISATION FOR RARE DISEASES

NGO / non-profit · Health & pharma · HQ: France · Transparency Register entry

As of 9 September 2026, EUROPEAN ORGANISATION FOR RARE DISEASES appears in 56 declared MEP meetings (30 different MEPs), most often with European People's Party.

56
declared meetings
with current MEPs
30
MEPs met
€400,000/yr
declared lobbying spend
self-reported to the register
4.0
lobbyists
full time equivalent

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. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens…”

Stated goals from the organisation's own Transparency Register filing.

Who they meet, and when

Which groups they meet

Share of this organisation's 56 declared meetings, by the meeting MEP's political group.

European People's Party2138%
Socialists & Democrats1323%
Greens/EFA916%
Renew Europe814%
Patriots for Europe35%
Non-attached12%
The Left12%

Meetings by year

Declared meetings per calendar year, 2021–2026. Bar length is relative to its busiest year (31 in 2024).

2021
2
2022
3
2023
10
2024
31
2025
3
2026
7

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

Tilly Metz
8 meetings · Greens/EFA
Vytenis Povilas Andriukaitis
5 meetings · S&D
Nicolás González Casares
5 meetings · S&D
Tomislav Sokol
4 meetings · EPP
Stine Bosse
4 meetings · Renew

The 15 most recent declared meetings

DateMEPSubject
18 May 2026Vytenis Povilas AndriukaitisBiotech Act
2 Apr 2026Nicolás González CasaresRare Diseases
17 Mar 2026Elena Nevado del CampoINL Rare Diseases
3 Mar 2026Nicolás González CasaresRare Diseases
28 Jan 2026Stine BosseRare diseases
13 Jan 2026Vytenis Povilas AndriukaitisExchange of views
12 Jan 2026Vytenis Povilas AndriukaitisCoordination call
6 Nov 2025Nicolás González CasaresRare Diseases
5 Mar 2025Isabel Wiseler-LimaRare Disease Day
15 Jan 2025Vlad Vasile-VoiculescuIntergroup on cancer and rare diseases
5 Dec 2024Stine BosseEuropean health policy
20 Nov 2024Margarita de la Pisa CarriónEnfermedades Raras
20 Nov 2024Victor NegrescuEU health policies and EU budget
20 Nov 2024Adam JarubasSytuacja pacjentów chorób rzadkich w UE - Europejski Tydzień Chorób Rzadkich w Brukselii
20 Nov 2024Olivier ChastelPolitique de santé de l Union européenne

Meeting an MEP is a normal part of democratic life; the record is shown so anyone can see it.