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

Rare2030 Young Citizens Debate

28 October 2020 at 14:00 CET, registration. For more information please contact

All-ePAG Online meeting

Private Meeting

5-6 November 2020, for more information please contact

How to illuminate buildings for Rare Disease Day

19 November 2020, 9:00 CET, registration.

How to organise action at national level to integrate ERNs

15 December 2020 at 16:00 CET, 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: 26/10/2020
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.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 Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases