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.


Empowerment time!

Deepen your understanding of pre-clinical research🔬 to effectively participate in discussions with researchers. Apply now for the next #EURORDIS Winter School taking place 21-25 March 2022.

#EURORDISOpenAcademy #EURORDISWinterSchool


#Alkaptonuria is a genetic disease first described in 1902. Thanks to the partnership through the #EU project the 1st treatment have been approved in Europe in 2️⃣0️⃣1️⃣2️⃣.

Hear all the story from @Nick_Sireau, ... @AKUSociety.


Do you know the next Black Pearl Awardee?

There’s someone in your network who has improved the lives of people living with a rare disease through their extraordinary efforts. Let’s get their contribution noticed! Nominate them today!

👉 ...

Where do you see yourself in 🔟 years?

Nearly half of people living with a rare disease hope to successfully manage the symptoms of their disease, even if they are progressing.

Learn more! ℹ️ ...

The @EU_Commission's decision to abandon the operating grant in the 2021 Work Plan undermines the ability of EURORDIS and other European health NGOs to contribute meaningfully to implementing EU4Health programme’s objectives. #SaveEUHealthNGOs

... 👉

Dear UN... ✉️

What challenges do you face in your daily life with a rare disease?

Help UN policy makers understand and empathise with the challenges individuals, caregivers and families face by sharing your testimony!


 Organised by:

Co-organised by :


With the support of

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Full partners

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Rare2030 logo
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Associate partners

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