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NOW ONLINE! – The European Conference on Rare Diseases & Orphan Products (ECRD) 2020

May 15 - May 16


Important note: ECRD 2020 moves ONLINE!

In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming ECRD will now take place ONLINE on 14-16 May (more information). The health and safety of all stakeholders participating in ECRD, including people living with a rare disease and their carers, is our primary concern.

Over 100 speakers will lead online, interactive sessions and be available to answer questions. Features of the online platform will include the flexibility to move between parallel sessions, online networking opportunities and a poster display. EURORDIS is working to build an online conference that is a unique and engaging experience.

  • The price structure of fees to attend ECRD online will be revised to reflect the change in
    event format. If you have already registered, you will receive information regarding a reimbursement of the difference in cost for registration.
  • Details of updated fees and how to participate online in the ECRD will be made available soon below and by email to participants that have already registered.
  • Anyone who has reserved a hotel through Meetagain, our official hotel contractor, can contact ecrd-housing@meetagain.se directly to claim a reimbursement by 1 April.

Note for EURORDIS members: The EURORDIS Annual General Assembly will now also take place online. Information on how to participate online will be sent directly to you in the coming weeks.



The European Conference on Rare Diseases & Orphan Products (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.

The event draws together more than 800 participants from over 50 countries around the world. Leading, inspiring and engaging all stakeholders to take action, ECRD is where innovative solutions in the rare disease field are born. 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.

Brian O’Connor will moderate the  Session “Patient Organisations and health data”, the objective is to learn about the role patient organisations can play as data curators: what do they need in terms of capabilities, tools and processes, education and tips on how to develop partnerships with technology companies

Bleddyn Rees will moderate the session “Quality assessment of mHealth apps”, which objective is to equip attendees with important aspects of assessing an app/platform: safety and effectiveness, benefits and risks

People living with a rare disease have the right to reach their highest potential of well-being; join us in ECRD 2020 Stockholm to take part in discussions to inform and build the future ecosystem for rare disease policies and services.


Are you conducting research on rare diseases or public health projects? Don’t miss the chance to showcase your work at #ECRD2020, submit your poster abstract by 10 February:

More information here: https://www.rare-diseases.eu/posters/?fbclid=IwAR2h9AIhkapaucMk8kber2t8Q0IYm7sR4OHmByJDKENjlinvS1OG4SDMfOA

Early bird-rates are available through this link until 20 March!

If you represent a startup or SME tech company, we have a special registration fee for you contact martina.bergna@eurordis.org to learn more.




May 15
May 16