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.

Over 1500 registered participants convened from 57 countries – representing all stakeholders – to place rare diseases in the spotlight during this two day online conference. ECRD 2020 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!

Full content is still available on demand for one full year until May 2021! If you missed the opportunity to join the live online conference, you can still access recordings of all sessions by registering here.

Here is a taster of what you will be able to access:

European Commissioner Helena Dalli plenary speech

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

You can also preview the following pre-recorded sessions from Theme 2 and 4: Getting our rights ‘right’: An international framework for rare diseases (Theme 2)  and  Orphan Drug Development Guidebook (Theme 4)


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.


This has been a great opportunity for our members and really great to work in partnership with @eurordis who are also a member of @ECHAlliance

1 of 70 Patient and Citizen's groups that make up our membership

Vital for ecosystems to lead with a need so we ... are #connectingthedots

The 2021 RE(ACT) Congress & @irdirc Conference is a wrap!

This has been another amazing opportunity to discuss #EUfunded research dedicated to rare diseases.

Discover more on #rarediseases 🔬 actions led by the @EU_Commission on our dedicated ... page👉!pk94Kr

More than 35,000 children & young people are diagnosed with cancer every year.

Join the International Childhood Cancer Awareness Day event, organised by @SIOPEurope and hosted by MEP @loucas_fourlas


Our Coordinator Ansgar Lohse has recored a video message and a statement on COVID-19 vaccines in rare liver disease patients (statement available in several languages). Please share:

The health of 30 million people living with a #raredisease in Europe should not be left to luck.

@yann_eurordis has presented the policy recommendations of the @rare2030 project at the @irdirc conference.

📣 What do you want your future to look like? ...

Patients with Ondine’s Curse fall asleep to the unpleasant sound of medical equipment 🔊

That’s why Magda and Tomasz, former Black Pearl Awardees, have launched ‘Ondinata’, a compilation of songs that will help you relax before bed 😴

👉 ...

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