HLM4Rare '26 High-Level Meeting

THE EU INNOVATION LAB: FROM RARE AND COMPLEX DISEASES TO A EUROPEAN HEALTH ECOSYSTEM

2026 High Level Meeting of the Health Leadership Mission for Rare Diseases

1 – 2 December 2026 | Concert Noble, Brussels, Belgium

3 December 2026 | European Parliament, Brussels, Belgium

SAVE THE DATE ON YOUR CALENDAR

HLM4Rare 2026 builds on the momentum generated by the High-Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases 2025, a landmark EU event that brought together political leaders, policymakers, European Reference Networks (ERNs), patients, researchers and industry to advance coordinated European action. The 2025 meeting led to the adoption of the Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases, endorsed by 51 organisations.

This year, HLM4RARE has convened eight multi-stakeholder Working Groups to translate the Declaration’s recommendations into concrete, evidence-based Plans of Action. These will detail tangible actions and a roadmap for action from 2027 onwards and will be launched and discussed at the next anual conference, which will be held in Brussels on 1-3 December, 2026. This conference will, once again, bring together from all over Europe political leaders, policymakers, European Reference Networks (ERNs), patients, clinicians researchers and industry.

OUR DRAFT PROGRAMME

The programme will update constantly as new speakers are confirmed.

MEET SOME OF OUR SPEAKERS

Olivér Várhelyi

Commissioner for Health and Animal Welfare

Vytenis Andriukaitis

Member of the European Parliament (S&D, Lithuania) and co-host of HLM4Rare

Wouter Beke

Member of the European Parliament (BE, EPP)

Séamus Boland

President of the European Economic and Social Committee

Stine Bosse

Member of the European Parliament (DK, RE)

Dana Burduja

Head of Life Sciences and Health Division, European Investment Bank

Emer Cooke

Executive Director, European Medicines Agency (EMA)

Joanna Drake

Deputy Director-General, DG Research and Innovation, European Commission

Manuel Heitor

Former Minister for Science, Technology and Higher Education of Portugal

Adam Jarubas

Member of the European Parliament (PL, EPP) & Chair of the SANT Committee

Roberta Metsola

President of the European Parliament

Victor Negrescu

Vice President of the European Parliament (RO, S&D)

Linas Kukuraitis

Minister of Health, Lithuania

OUR 2026 SPONSORS

Platinum Sponsors

Gold Sponsors

Silver Sponsors

Silver- Sponsors

REGISTER NOW FOR IN-PERSON AND/OR REMOTE ATTENDANCE

The in-person registrations will close on 24th November end of day.

Registration limits:

Pharmaceutical and biotechnology companies that are not sponsoring HLM4Rare in 2026 will only be allowed max. 2 in-person representatives per day. If registrations go over this number we reserve the right to decline registrations.
Registrations from consultancy representatives will be accepted with a max. of 2 people per consultancy, per day. If registrations go over this number we reserve the right to decline registrations.

HLM4Rare 2026 Conference

Section 1 – Your details

First Name

Last Name

Job Title / Role

Organisation / Affiliation

Type of organisation

Please specify

Country of residence

Section 2 – Registration

Would you like to follow any part of the conference remotely?

When will you join us in person? (Select all options that apply)

Do you have a European Parliament accreditation badge?

Section 3 – Additional details for EP entrance

Nationality

Date of Birth

Type of ID

ID / Passport number

Expiration date

Section 4 – Finalisation

Additional comments

I agree and consent that the personal data provided in this form will be collected, processed and stored in accordance with the EU General Data Protection Regulation (GDPR) (Regulation (EU) 2016/679). My data will be used solely for the purpose of processing my registration and participation in this event. I also agree that my data will be stored on the Brains for Brain Foundation servers.

During this event, photographs and/or videos may be taken and used by the organisers for promotional, educational, or informational purposes in any media format, including online and print. I understand that when entering the room I am acknowledging this notice.

GET IN TOUCH

For any questions related to our high level meeting send us an email at info@hlm4rare.eu