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.


Do you know what European Reference Networks (ERN) do for people living with a #RareDisease?

🔹 Watch this video & learn how ERNs can support your doctors to get advice on your diagnosis and treatment.


Full video in all 🇪🇺 ... languages:

🎉 Thanks to all our jury and Rare2030 young citizens for an excellent debate on issues such as discrimination, holistic care (mental/sexual health) and how collaboration across Europe (An EU Agency for RDs?) can help achieve this!

🔗 More info soon on ...

I am pleased to announce that following @EMA_News recommendation & the excellent work carried out by #EUfunded #DevelopAKUre, the @EU_Commission has adopted the Decision to extend marketing authorisation for Orfadin for the treatment of #Alkaptonuria👏

... ➡️!ft86VC

📢The RDI October Newsletter is out today
This month we will talk rare disease #diagnosis in #Mexico with @FEMEXER , @InfoAliber 's 8th Meeting and #RAREFest20 and other online events in November.

@eurordis @cord @RareConnect @enfermedadrara
... 👉

Don't miss the chance to follow live the @Rare2030 Young Citizen Fall Debate today! #RareDiseases 👇

Sara is a Canadian women 🇨🇦 who has been living with #EosinophilicEsophagistis for 15 years. She has found support in online groups. 💬

“Being rare has made me understand anxiety. It’s made me realize my self worth.” #RareDiseaseDay

👉Tell ... your story:

 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