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.


Today is LHON Awareness Day! 🌿

Follow the live event from 17:00h to 19:00h CET


In September the global rare disease community advocates for cohesive, comprehensive and inclusive newborn screening policies. A critical step towards #Diagnosis and care for children living with a #RareDisease

Join #2020nbs and follow @ORDIndia & ... @RareDiseaseGh

Make your nomination or enter yourself to be in with a chance of winning one of the 13 EURORDIS Black Pearl Awards 2021! 🔽

🚨 Nominations are open until 30th September 2020.


Today at the #conect4children workshop, participants are learning how to be involved in paediatric clinical trials at European level and what is fair research for children 👶👧

🟢🟣 Find more useful resources on @c4c_network academy: ...

This week we are taking part in the General Assembly of the @EJPRareDiseases!

The #EJPRD brings over 130 institutions (including all 24 ERNs) from 35 countries: 26 EU Member States, 7 associated, UK & Canada.

👉 Check the full program:

 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