Lobby organisation
Skeletal Dysplasias Alliance
NGO or non-profit · Health & pharma · HQ: Belgium · Transparency Register entry
As of 8 October 2026, Skeletal Dysplasias Alliance appears in 6 declared MEP meetings (6 different MEPs), most often with European People's Party.
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.”
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“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 europea. Abogamos por los derechos de las personas con displasias esqueléticas para que disfruten de una vida en igualdad de condiciones con el resto de la población.”
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, 2023–2025. Bar length is relative to its busiest year (4 in 2025).
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 |
|---|---|---|
| 11 Nov 2025 | Tomislav Sokol | Health Policy |
| 11 Nov 2025 | Elena Nevado del Campo | Documento de posicionamiento "Voices into action" |
| 11 Nov 2025 | Katrin Langensiepen | EU Action Plan on Rare Diseases and the revision of the EU Pharmaceutical Package |
| 11 Nov 2025 | Romana Jerković | Skeletal Dysplasias |
| 3 Sep 2024 | Tilly Metz | Rare diseases |
| 5 Oct 2023 | Jonás Fernández | Skeletal Dysplasias |
Meeting an MEP is a normal part of democratic life; the record is shown so anyone can see it.