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.

The next ECRD will take place fully online from 27 June until 1st July 2022.

Last year, over 1500 participants convened to the ECRD 2020, from 57 countries – representing all stakeholders – to place rare diseases in the spotlight during this two day online conference. The event provided the opportunity to co-design policy options today that can lead to better conditions for people living with rare diseases for the years ahead. ECRD attendees spent the course of the conference laying the foundation of these preparations and all of you are invited to continue your involvement in Rare 2030 throughout the year!

Here are some of the highlights from the last conference:

European Commissioner Helena Dalli plenary speech

Dr Gareth Baynam "Life languages and red flags in the red sand"


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.


How can we use the lessons learned from the COVID-19 pandemic to ensure a better future for everyone living with a rare disease?

Read the article now:

Face to face is best! 👩‍⚕️

Remote consultations are a great tool for people living with a rare disease, but they can't replace all in-person health care.

Sign up for our Rare2030 webinar & explore survey findings on remote health care and ... more:

Share Rare Diseases International's infographic of life with a rare disease, and help raise awareness and understanding on the challenges of a rare disease throughout a lifetime: @rarediseasesint

From EU #HealthUnion fairytale to #CivilSociety nightmare: A tale of public ‘praise’ for Cinderella civil society while excluding her with ‘crumbs’ to live on

'Praise-crumbs' won't sustain us say NGOs, time to #BringBackOperatingGrants now ... @SKyriakidesEU

#Resolution4Rare = addressing the challenges of people living with a rare disease and their families.

Support our call for a UN Resolution by raising awareness on social media:


Help to build a world with better medicines for babies, children and young people!

Answer a short survey and let @c4c_network know how you feel about clinical research:

📸: Artem Kniaz on Unsplash

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With the support of

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Full partners

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