The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community  – patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators.

Join us at ECRD 2020 online to take part in discussions to inform and build the future ecosystem for rare disease policies and services.

The opening and closing plenary sessions will be broadcast live in English, French and German.

The Full Conference Programme is available now.


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.


Shaping the future of health in the EU together is more urgent than ever. The #EU4Health coalition is urgently calling on @Europarl_EN @EU_Commission & @EUCouncil
to ACT NOW for a stronger health policy. Read/sign our joint statement: ... #StrongerTogether

Thank you to all patient representatives from Central & Eastern Europe countries who participated in a recent @imi_paradigm workshop to give feedback on tools being developed to support sustainable patient engagement in medicines R&D
Read more 👉 ...

We're looking for people affected by any of these #rarediseases that would like to connect with others living with the same condition. Interested? Send us an email at [email protected] or visit

Share this image and help us ... #BreakTheIsolation!

Calling all #raredisease & rare cancer patient advocates
👉Register now for the first webinar of the EURORDIS Digital School 2020-2021 on the topic 'Helping Patient Organisations Plan and Create for Social Media Success' (18 June) ...

Register now - EURORDIS will be co-hosting a webinar with @EU_Health of @EU_Commission on 9 June "The impact of #COVID19 for people living with a Rare Disease" during which we will present results from our COVID-19 survey by ERN disease grouping. Register: ...

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With the support of

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Full partners

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Associate partners

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