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.

The next ECRD will take place fully online from 27 June until 1st July 2022.

Last year, over 1500 participants convened to the ECRD 2020, from 57 countries – representing all stakeholders – to place rare diseases in the spotlight during this two day online conference. The event 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!

Here are some of the highlights from the last conference:

European Commissioner Helena Dalli plenary speech

Dr Gareth Baynam "Life languages and red flags in the red sand"


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.


Are you a person living with a #RareDisease, or a carer, actively involved in a patient organisation?

Join our online community and share your experience!

Today is your last chance to register:

Newborn screening is a 🔑to a better future for people born with rare diseases.

As we celebrate the Newborn Screening Awareness month, we call on Europe to adopt the 11 Key Principles for newborn screening:

@apneuromuscular ... @95Rare @FEDER_ONG

Are you an advocate for people living with a rare disease? Take our free online training and learn how to:

☑️ Create empowered communities
☑️ Build effective channels and reach the right people.

Learn more:

Newborn screening can help families better plan for their child’s care and treatment.

We want to reinstate the importance of a harmonised approach to newborn screening across Europe to guarantee the highest standard of health for all newborns: ... #2021NBS

Today is your last chance to enter your nomination for one of the 1⃣2⃣ Black Pearl Awards' categories this year!

Let's shine the light on the outstanding accomplishments of all those going that extra mile to improve the lives of people with rare diseases:...

On this #WorldPatientSafetyDay, we are taking the opportunity to spread awareness on the importance of reporting potential experienced side effects.

Reporting makes medicines safer for everyone and has never been easier with online tools available: ...

 Organised by:

Co-organised by :


With the support of

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