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.


Well-being means much more than just merely 'coping'. It is about a caring society, where everyone gets the support they need. This should be our new European horizon!

Let’s make sure policy makers hear your voice #ShareYourReason
... #30millionreasons

Join EURORDIS’ first Facebook Live event on COVID-19 vaccines 💉 on Thursday 20th May 6 pm CEST!

Listen to our CEO Yann Le Cam and vaccine expert Francois Houÿez in the interactive session. Get the latest information and ask your questions! ... 🙋‍♂️🙋‍♀️

The Co-Chairs of the Global Commission including our CEO, @Yann_Eurordis, Wolfram Nothaft of @TakedaPharma & Greg Moore of @Health_IT have recently shared their thoughts on how #AI may enable faster rare disease diagnosis in @medcitynews

Read more here ... 👉

📢The video 📽️of the session "How to connect patients in EU to #CutaneousLymphoma experts via ERN?" of the #CL #TopicOnFocus for Patients Organizations organized by @ERNEuroBloodNet @knowyournodes @eurordis
#CLF @LymphomeEspoir is available here: ...

How strong has been the impact of the pandemic on patients organisations?

💰44% have concerns over their financial stability
📉50% had to change the organisation’s focus

Be sure to read the latest @eupatientsforum survey to learn more: ...

Yann Le Cam, Chief Executive Officer of EURORDIS-Rare Diseases Europe, shares his highlight from the EURORDIS Membership Meeting 2021 – “A community that looks out for the most vulnerable and strives for equity, respect and dignity for all!” #EMM2021

... ℹ️

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