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.


Rare Disease Week has proved to be a success! 👏

38 advocates 📣
from 20 countries 🌍
representing 20 disease-specific areas🧬🧠🩸

…have been trained this week to better advocate at the European level for people with rare diseases!

... 👉

#ThrowbackThursday Seems like it was yesterday when we celebrated 👏 the outstanding achievements of our community.

Hold on. It was yesterday! 🥳 If you missed it or wish to remember the importance of the #EURORDISAwards, this is your chance! ✨

Thank you for being with us tonight! 🥰

We are pleased to see so many people connected to celebrate all the heroes who have shown their commitment to improving the quality of life for people with rare diseases.

See you next year at the Black Pearl Awards ... 2022 👋

Stay tuned!

Senza l'abito da cerimonia ma seguo il #BlackPearlAwards Gala. Il Presidente del Parlamento Europeo #DavidSassoli è con noi. #EURORDISAwards2021 #Uniamoleforze

Love knows no disease 💙

The sky is the limit when you have this unwavering, unbreakable and unparalleled fondness and devotion for your partner 🧑‍🤝‍🧑

Congratulations, Pavol Kulkovský, and thank you for sharing this beautiful moment!

... #RareDiseases #EURORDISAwards2021

I'm proud and more then ever devoted to serve people living with rare diseases and work together with pacients organizations. Today I will celebrate and tomorrow I will try even harder. People with rare diseases deserve the best and I'm here to help them.
... #EURORDISAwards2021

 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