MEP of the week

Lobby organisation

Skeletal Dysplasias Alliance

NGO / non-profit · Cross-sector / other · HQ: Belgium · Transparency Register entry

As of 9 September 2026, Skeletal Dysplasias Alliance appears in 6 declared MEP meetings (6 different MEPs), most often with European People's Party.

6
declared meetings
with current MEPs
6
MEPs met
not declared
declared lobbying spend
self-reported to the register
0.3
lobbyists
full time equivalent

In their own words

“Se trata de una Alianza formada por 8 grupos de 8 países europeos que representan y son punto de encuentro de personas con acondroplasia y displasias esqueléticas. La Alianza tiene como finalidad reforzar la unión de todas las personas con displasias esqueléticas en Europa, creando una voz común con el poder de tener un impacto sobre decisores públicos y sociedad…”

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.

European People's Party233%
Greens/EFA233%
Socialists & Democrats233%

Meetings by year

Declared meetings per calendar year, 2023–2025. Bar length is relative to its busiest year (4 in 2025).

2023
1
2024
1
2025
4

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

Romana Jerković
1 meeting · S&D
Jonás Fernández
1 meeting · S&D
Tilly Metz
1 meeting · Greens/EFA
Tomislav Sokol
1 meeting · EPP
Katrin Langensiepen
1 meeting · Greens/EFA

The 6 most recent declared meetings

DateMEPSubject
11 Nov 2025Tomislav SokolHealth Policy
11 Nov 2025Elena Nevado del CampoDocumento de posicionamiento "Voices into action"
11 Nov 2025Katrin LangensiepenEU Action Plan on Rare Diseases and the revision of the EU Pharmaceutical Package
11 Nov 2025Romana JerkovićSkeletal Dysplasias
3 Sep 2024Tilly MetzRare diseases
5 Oct 2023Jonás FernándezSkeletal Dysplasias

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