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

Consultation on EURORDIS Newborn Screening draft position statements

22 September from 12:00 (CEST)

Open to rare disease national alliances and European Federations. Contact for more info.

This teleconference call is held specifically to consult and gather feedback from National Alliances and European Federations on the draft Newborn Screening position statements that have been developed by the EURORDIS Newborn Screening Working Group.

EURORDIS Digital School webinar: Working with celebrities - successful examples from the rare disease community

29 September from 14.00 - 16.00 (CEST)

>>> Join the webinar

External webinars with EURORDIS speakers

Check back soon for more external webinars with EURORDIS speakers. 


Past webinars

Previous webinars are made available as a video in the section below. 



Page created: 20/01/2016
Page last updated: 18/09/2020
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