The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe.

By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.

With over 700 participants attending in 2024, the Conference represents an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts, these discussions culminate in clear policy recommendations that can influence both EU and national policies.

The 12th ECRD took place as a fully hybrid conference on 15 & 16 May 2024 online and in Brussels and culminated in the output of a co-created, open letter to EU Institutions and country leaders. Now it’s your chance to join ECRD participants in signing the letter to create a solid legacy for the future EU rare disease policy

With the European elections approaching, at the inception of a new term for the European Parliament and the European Commission, the 12th ECRD was a key driver in shaping policies to address the unique needs of people with rare diseases and their families over the next five years.

The ECRD’s value is underscored by its alignment with EURORDIS’ priorities for the EU elections, evident in its comprehensive six-session agenda.

What sets the ECRD apart is its integration into broader rare disease policy and healthcare ecosystem efforts. Rooted in the recommendations of the Rare 2030 Foresight Study, the ECRD continues to build on this comprehensive review of the strategy for rare diseases and shape the thinking of policymakers and the community, encouraging a more streamlined and proactive approach to addressing the unmet needs of people living with rare diseases and the persisting inequalities across Europe.

Essentially, each ECRD is not a standalone initiative but a crucial element of a continuous, collaborative drive to bring about positive change in the rare disease field.

The conference featured closed captioning in 12 languages to accommodate our diverse international attendees. Available languages included Spanish, Portuguese, German, French, Italian, Polish, Romanian, Dutch, Greek, Hungarian, Czech and Danish. This service was part of our commitment to making the conference accessible and inclusive for all participants.

EURORDIS is also committed to making our events as sustainable as possible. Discover how we reduced the carbon footprint of this year’s conference by adapting our transport, catering and paper usage.



Tune in to the Rare On Air episode on ECRD, in which host Julien Poulain brought together key figures from the rare disease community in the run-up to the 12th ECRD, to discuss the highly anticipated conference. Sharon Ashton, EURORDIS Events and Open Academy Director, delves into the evolving dynamics of the ECRD, reflecting on its growth and impact over the years. Valentina Bottarelli, EURORDIS Head of Advocacy, highlights the conference’s potential to influence European rare disease policy, particularly in the context of the upcoming European Parliament elections. Meanwhile, Gabriella Almberg, representing EFPIA, offers an industry perspective, emphasising the conference as a crucial nexus for collaboration and learning between medicine developers and the rare disease community. Listen to the full episode below!

Listen now to the episode on Spotify, Apple Podcasts, Amazon Music or Google Music or below.


about the latest advances, challenges, facts, figures and trends in the field of rare diseases with over 100 expert speakers.


of rare diseases alongside patient advocates, policy-makers, healthcare industry representatives, clinicians, payers, regulators and Member State representatives.


to all stakeholders of the rare disease community.


 Organised by:

Co-organised by :


With the support of

AFM logo

EU funding logo

Full Partners

Asssociate Partners

Media Partners