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 1000 participants, the Conference is 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.

Get ready for the next ECRD, a fully hybrid conference taking place on 15 & 16 May 2024 online and at The Square in Brussels.



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With the European elections approaching, at the inception of a new term for the European Parliament and the European Commission, the 12th ECRD becomes 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, the 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 will feature closed captioning in 12 languages to accommodate our diverse international attendees. Available languages include Spanish, Portuguese, German, French, Italian, Polish, Romanian, Dutch, Greek, Hungarian, Czech and Danish. This service is part of our commitment to making the conference accessible and inclusive for all participants.



Tune in to the Rare On Air episode on ECRD, in which host Julien Poulain brings together key figures from the rare disease community 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.


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With the support of

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