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.


EURORDIS has signed this Joint Letter on #COVID19andCancer in support of the 5.1 million people living with rare cancer in Europe. #StrongerTogether

A warm welcome to the 2⃣6⃣ patient advocates from 16 countries that are taking part, from today, in the 2021 #EURORDISWinterSchool! 🙌

They will learn more about...
👩‍🔬Scientific Innovation
🔬Translational Research

Visit the EURORDIS Open ... Academy👉

The European Alliance for Newborn Screening (NBS) in Spinal Muscular Atrophy #SMA demands that by 2025, NBS programs in all European countries include a test for SMA for all newborn children 👣

Do you have an update about your country? ...

Save the date! The @ERN_RND and @euro_nmd joint webinar on language-led dementias.

📅 4 May, 15-16h CET
📣Speaker: Anna Volkmer (@volkmer_anna)

Register now👉

Some people continue to experience COVID-19 symptoms weeks after the infection. Those living with a rare disease are particularly affected, being at increased risk of getting seriously ill from the coronavirus.

👉Get the right support now: ...

People living with a #raredisease🧑 and their carers 👩‍⚕️are experts on the disease that affects them

We need a new rare disease policy at the EU level, which would engage🤝, empower💪 & treat patients and carers as policy actors!

... #Rare2030 👉

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