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The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.

Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives.

The next ECRD will take place fully online from 27 June to 1 July 2022.

This 11th edition follows a pivotal two-year Rare 2030 Foresight Study, supported by the European Parliament and European Commission, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030.

The concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world.

This ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.

Why participate in ECRD 2022 online?

  • Using the virtual event’s platform you can join ECRD from anywhere you wish, with the
    possibility to re-watch on-demand session at your convenience.
  • Direct from your desk – participate in sessions run by industry experts built around three
    themes in line with the UN Social Development Goals. Over 100 speakers will lead online,
    interactive sessions and be available to answer questions.
  • Special registration fees for patient representatives and healthcare professionals will make it
    easier for all stakeholder groups to take part!

Features of ECRD 2022 online:

  • A more flexible conference! You will be able to switch between parallel sessions and access
    recordings of all sessions until the end of the year.
  • Access to hundreds of multimedia ECRD posters. Use interactive games, quizzes and badges
    to make connecting from your home or office more fun.
  • The online platform is being built to guarantee online networking opportunities with speakers
    and fellow conference participants, as well as with posters authors.


Deadline for the poster abstracts submissions for the ECRD 2022 are now extended to 21st April.

Visit https://www.rare-diseases.eu/ for more details and how to register.


27. June 2022
1. July 2022




EURORDIS-Rare Diseases Europe
View Organizer Website

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