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.


The sun is out, Summer School is in full swing. This week 2️⃣6️⃣ patient advocates and 7 researchers, from 19 countries, representing over 19 rare diseases are meeting online to become experts in medicines research and development.

... 👉


Co-operation at the European level is key to advancing rare disease research and care. We need a European single market for gene therapies to ensure that all patients have access to the treatment they need.

828 people have given their reason for European action on rare diseases. Will you help us get 172 more?

When we get together, our voice is strong enough to bring about positive change in the life of everyone living with a #raredisease in Europe. ... 👉

Our wish for this week? The #HTARegulation approved!💪

Today might be a milestone towards European cooperation on HTA, for which we all have been waiting for so long!

📣EURORDIS joins the call on @Europarl_EN and @2021PortugalEU to finalise the HTA ... Regulation!

This week 26 patient advocates and 7 researchers from 19 countries have joined the #EURORDIS Summer School to become experts in medicines research and development!🔬

Together we can make a difference! 💪

The intensive training of this year's #EURORDISSummerSchool just started! Here's what the #RareDisease patient advocates & researchers attending told us about their 24h+ pre-training 💪(webinars, e-learning courses): informative, interesting, ... comprehensive, inspiring & much more

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