EURORDIS webinars

EURORDIS webinars take place to update member organisations or the wider rare disease community on a new activity, to engage participants in a consultation or to educate on a new topic that is relevant to rare disease patients, such as genome editing. They are designed to be interactive so that participants can ask questions via a chatbox or their microphone.

Upcoming webinars

Webinar: #30millionreasons campaign update

Join us on 15 September to check in on the progress of our campaign #30millionreasons for Europe's Action Plan for rare diseases.

  • 15 September 2021, 15.00-16.30 CET
  • Register here.


EURORDIS BEST PRACTICE WEBINARS: Deep dive on integration of ERNs into national health systems

  • 14 October 14.00-15.30 CET
  • See the full agenda here.
  • Please click here to register for the webinar.

Contact: Ines Hernando –


External webinars with EURORDIS speakers

RARE 2021 - Les rencontres des maladies rares

  • 14 October de 9.00-17.00 CET, 15 October de 9.00-16.30 CET
  • Please click here to register - registrations open 30 September
  • Yann Le Cam will speak on 14 October 9.30am during Session I: 'Présidence française de l’Union européenne'
  • Virginie Hivert will speak on 15 October at 11.30am during Session VII: 'Quel est le rôle des patients dans la recherche et dans le cycle de vie du médicament?'


Page created: 20/01/2016
Page last updated: 17/09/2021
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases