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 have set out 11 Key Principles for #NewbornScreening
These principles will support an harmonised European approach to NBS that will help to reduce vast inequalities across Europe.


Early diagnosis may significantly improve lives of people living with a rare disease. #NewbornScreening is a very important element in our toolbox. #RareDiseaseNI @NI_RDP

#NewbornScreening 👣 holds one of the keys to a better future for people born with a #raredisease in the years to come

It is up to the European Union, and its Member States, to ensure this opportunity is not missed 🇪🇺

🔹Share our 11 Key ... principles!

Books, poems, magazines… 📖 the Written Media #EURORDISAwards2021 finalists have raised awareness for people living with a rare disease on all kinds of print and online media!

Learn more about our 4 amazing finalists✨and vote for your favorite one! ... 👉

Join the #KallmannSyndrome RareConnect community to share experiences and discover your support network!


📢The Patient Journey Infographic is on the Solve-RD website now! 🎉

It is available in 16 languages, isn't that impressive?😊
Thanks to our #volunteers for translating this infographic!
Stay tuned ... for more
@eurordis #undiagnosed #rarediseases

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