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.


We are looking forward to finding out who will be the next recipients of the Black Pearl Awards 2022!

🗳️Nominate your star scientist, patient advocate or volunteer contributing to the rare disease cause here:

Already over😓 Always a pleasure European Membership Meeting 💜💙💚Sharing, learning, empowering - #strongertogether on our way to improving the lives of people with #RareDiseases Honour to be part of this movement #thx @eurordis #improvingLives ... #30MillionReasons #EMM2021

Ongoing EURORDIS Membership Meeting: very interesting. Congratulations !!
@eurordis @yann_eurordis @uniamofimronlus

⏰Only 30 minutes left to register for the last day of the EURORDIS Membership Meeting #EMM2021

Today, we will be focusing on the tools you need to advocate during the upcoming Rare 2030 campaign.

Let’s move the rare disease agenda forward together! ... 💪

There are 30 million people living with a rare disease in Europe. Together, we have #30millionreasons for action on rare diseases!

Share your reason for EU policy-makers to step up to the challenge of improving the lives of people with rare diseases now.


We are the 30 Million people asking for a EU Action Plan for Rare Diseases to

✅ Improve the quality of people living with a rare disease
✅ Extend their life expectancy
✅ Establish Europe as a world leader in #raredisease therapies

👉 ... #30millionreasons

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