The primary policy objective of ECRD 2024 was to ensure that rare diseases remain a top priority for the upcoming European political leadership, as the Conference set a decisive platform to champion the integration of a comprehensive European Action Plan on rare diseases into the new EU legislative agenda, rooted in the recommendations of Rare 2030. Spanning a range of areas including early diagnosis, accessibility and affordability of treatments, social inclusion, research and innovation, national strategies and access to highly specialised care, such an Action Plan would encompass all policies and initiatives impacting people living with a rare disease at both European and national levels, establishing clear, measurable goals to be achieved by 2030.

“If we were capable to do what we did for cancers, we can do it for rare diseases.”
European Commissioner for Health, Stella Kyriakides.

ECRD 2024 represented a great opportunity to translate political momentum into comprehensive actions for the EU’s new cohort of policymakers and leaders. The ECRD 2024 programme did this by addressing the key policy areas that form part of a broader policy framework. The conference culminated in the output of a co-created open letter to the EU Institutions and country leaders where expectations of the community were clearly spelled out and conveyed to decision-makers in an unequivocal manner, leaving a solid legacy for the future EU leadership.

For the first time in its history, ECRD was a fully hybrid conference, taking place on 15 & 16 May 2024 online and at The Square in Brussels. Conceived as an inclusive conference, the event offered live captioning for each session in the following languages: English, Spanish, Italian, French, German, Greek, Czech, Danish, Dutch, Polish, Hungarian, Romanian and Portuguese. This hybrid format built on the success of the previous online conference, to expand outreach to key stakeholders, showcase strong political support and build momentum for the post-ECRD 2024 implementation. This approach was a direct response to the feedback from our community and emphasises our commitment to making the conference more accessible and engaging for all. Click on the interactive boxes below to learn more about the programme.

ECRD Timeline

ECRD Programme


08.45 - 09.30


09.30 - 11.00

Dive into ECRD - Europe’s largest, patient-led, rare disease policy-shaping event!

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11.00 - 11.30

Comfort break

11.30 - 12.30

Learn and pitch your ideas in the Poster Pitch

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12.30 - 14.00


Join the poster scavenger hunt and organise your own informal side-meetings!


14.00 - 15.30
Choose one of the following parallel sessions

Revolutionising Funding Strategies for Breakthrough Therapies in Rarer Diseases

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No Health without Mental Health!
Let’s Co-create a Mentally Healthy Toolkit

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15.30 - 16.10

Another break for serious fun!

16.10 - 17.15

Join small group discussions

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17.15 - 18.00


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18.00 - 19.30

Enjoy music, food, a 'mystery ingredients' tasting competition and engage in structured networking!

(in person only)


08.30 - 09.00


grab your welcome coffee, and get ready for action!
09.00 - 09.45


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09.45 - 10.45

Poster Awards and Poster Pitch

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11.00 - 11.30

Comfort break

connect on a personal level while having fun!


11.30 - 13.00
Choose one of the following parallel sessions

The Path Forward for Equitable Diagnosis

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Achieving Full Reach: Overcoming the Last Challenges to Access Highly Specialised Care

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13.30 - 14.00

Lunch break!

Get ready for a serious fun and organise your own side-meetings!


14.00 - 15.30
Choose one of the following parallel sessions

Innovative Therapies, Unequal Access: Bridging the Gap for Rare Disease Treatments

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National Plans: Exchanging Best Practices to Forge a Unified European Response to Rare Disease

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15.30 - 16.15

Comfort break

create memories together!
16.15 - 16.45

Highlights hub

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16.45 - 17.30

Be part of the closing!

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Programme Committee Members

Gabriella Almberg

Simona Bellagambi

Matt Bolz-Johnson

Simone Boselli

Valentina Bottarelli

Jo de Cock
Advisor to WHO Europe and OECD

Toon Digneffe

Roseline Favresse

Holm Graessner
University Hospital Tübingen

Ines Hernando

Kirsten Johnson
Fragile X International

Zoi Kolitsi
I~HD Institute of Innovation through Health Data

Anne-Sophie Lapointe
French Ministry of Health and Solidarity

Yann Le Cam

Adéla Odrihocká
Rare Diseases Czech Republic

Francesc Palau
Hospital Sant Joan de Diu

Francesca Pasinelli
Fondazione Telethon

Ana Rath

Claas Roehl
NF Patients United

Eva Schoeters
RaDiOrg - Rare Diseases Belgium

Ariane Weinman

Stefan Živković
National Organization for Rare Diseases of Serbia

Outreach Committee Members

Simona Bellagambi

Birthe Byskov
Rare Diseases Denmark

Shun Emoto

Mirjam Mann
Allianz Chronischer Seltener Erkrankungen

Vicky McGrath
Rare Diseases Ireland

Ramaiah Muthyala
Indian Organization for Rare Diseases

Paulo Gonçalves

Charalampos Papadopoulos
Cyprus Alliance For Rare Disorders

Ulrike Holzer
Pro Rare Austria

Organised by:

Co-organised by:


With the support of

AFM logo

EU funding logo