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:

The Full Conference Programme is available here.


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.


The input of the @rare2030 Young Citizens is crucial to ensuring the project's final policy recommendations take into account intergenerational views on how to create a better future for people living with a rare disease
#StrongerTogether ...

@_FanniLaura "It is important to include in health dialogue psychosocial risks people living with rare disease face. Time to look at a person with holistic view: physical and mental health as well as social support.." Read about holistic care in our paper: ...

EURORDIS Patient Engagement Manager @ROB_CAMP has co-authored a new paper on #patientengagement in research alongside EURORDIS volunteers Russell Wheeler, Rainald von Gizycki & 10 others.
Register to hear Rob speak during an @ISPORorg webinar on 17 July: ...

Impressive work at #ejprd over the last months -it showcases what can be done by "catalysing resources to create a #raredisease ecosystem" @EUScienceInnov @eurordis @Orphanet

Only 2 days left to sign up for the @c4c_network online workshop on the life cycle of medicines:

Learn how to get involved in @c4c_network, a large European network that aims to facilitate the development of new drugs ... & therapies for children

Thank you to our Young Citizens! We end the conference with some of their thoughts:
💡"As young people we have to be optimistic. If we start big, there might be some changes."
💡"As a mother this is me trying to be optimistic about the future of my ... children & grand children."

Organised by:

Co-organised by:


With the support of

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Full partners

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EJP logo
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HOPE logo
Rare2030 logo
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Associate partners

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