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.


Last chance to join the @EMA_news workshop on medicine development in the EU!

🗣️ @VirginieHivert (EURORDIS) will be one of the speakers!
📅 November 30 - 9:00-13:00, CET
👉Registration: ...


The RE(ACT) Congress and @irdirc Conference go fully online in 2021!

This event will bring together scientific leaders and experts and young scientists to advance policy and research on #RareDiseases.

📅13-15 January 2021
🧑‍💻 Online
Register ... here:

Do you know how many #raredisease appointments were cancelled or postponed because of #COVID19?*

🧑‍🦽 80% of rehabilitation therapies
💉 6 in 10 surgeries or transplants
🏥 70% of appointments

... 👉

*Of 83% people whose care was disrupted

This week is the last week of our @imi_paradigm project!

Over the last 3 years we have developed tools and recommendations to make patient engagement easier for all.

Congratulations to all the people involved! 🥳

Download the tools here 👉 ...

Last chance to join the LIVE launch of the #RareImpact report!

What are the challenges and solutions for improving patient access to advanced medicinal products at the European level?

TODAY from 14:00 to 16:00, CET.
👉Register here: ...

Fantastic! @EMA_News listened to our call with @eupatientsforum & have organised a public stakeholder meeting on the development & authorisation of safe & effective #COVID19vaccines in the EU. This event is important for ALL patients!

Read our ... letter 📝:

 Organisé par :

Co-organisé par :


Avec le soutien de :

AFM logo

EU funding logo

Full partners

Agrenska logo
EFPIA logo
EJP logo
Eucope logo
EuropaBio logo
HOPE logo
Rare2030 logo
RDI logo

Associate partners

Media partners