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

RDD2021 Webinar - Digital communication

21 October 2020 at 14:00 CET, registration

Rare2030 Young Citizens Debate

28 October 2020 at 14:00 CET, for more information please contact

All-ePAG Online meeting

5-6 November 2020, for more information please contact

How to organise action at national level to integrate ERNs

15 December 2020 at 16:00, registration

External webinars with EURORDIS speakers

Raising awareness on managing competing interests in a multi-stakeholder environment: Guidance to patients and engaging stakeholders

EURORDIS Speaker: Maria Cavaller

27 October at 15:00 and 16:00 CET, link:, password: 042515

World Orphan Drug Congress Europe

EURORDIS Speaker: Yann Le Cam

2-5 November 2020, registration

Recommendations on required capabilities for patient engagement
Patient engagement in medicines development: Recommendations on how to find the right match for the right patient engagement activity

EURORDIS Speaker: Virginie Hivert

9 November at 15:00 and 16:00 CET, link:, password: 771465

Past webinars

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



Page created: 20/01/2016
Page last updated: 20/10/2020
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