Promoted by: Active Citizenship Network (ACN) in the context of the global COLLABORATE initiative

Hosted by: MEP Vytenis Andriukaitis (S&D, Lithuania) & the MEPs’ Interest Group “European Patients' Rights and Cross-border Healthcare”

Register here for in-person or online attendance

Please note that registration is free but mandatory, and will be accepted on a first-come, first-served basis. In-person places are limited and require security accreditation. Registrations might be closed at any time if the maximum capacity is reached. Online attendance is open.

The European Parliament in Brussels will host an institutional EU Policy Dialogue initiative to better address the unmet needs of adult-onset rare disease patients in Europe.

Promoted by Active Citizenship Network (ACN) in the context of the global COLLABORATE initiative—of which ACN is an official member—this event is sheduled from 13.30 to 15.00 at the EU Parliament in Brussel on 10 of December.

Around 30% of people living with rare diseases experience symptoms only in adulthood. Despite this substantial proportion, adult-onset rare diseases remain under-represented in rare disease plans and policies worldwide, receiving less research funding and facing diagnostic delays and communication barriers.

This policy dialogue aims to secure cross-party political champions in the European Parliament to advocate for equitable access to diagnosis (including genetic testing), care transition, and full recognition in EU and national health policies.

The multi-stakeholder meeting will gather representatives from civic and patient organizations, European Commission officials, MEPs, healthcare professionals, and key stakeholders. On this occasion, the COLLABORATE expert consensus paper will be officially presented to foster institutional dialogue and address the specific needs of adults living with rare diseases across Europe.

For further information, click here, to know more about ACN commitment on rare disease, please click here.

PRACTICAL INFORMATION

Date: Thursday 10 December 2026

Time: 13:30 - 15:00 CET

Venue: European Parliament, Brussels

Language: English

REGISTER NOW

Participation is free, but registration is mandatory to secure access to the European Parliament.

Register here to attend (Deadline for EP security access: 26 November 2026)

For further inquiries, please contact Active Citizenship Network at: This email address is being protected from spambots. You need JavaScript enabled to view it.

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