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

CNA Webinar: WHO Collaborative Global Network for Rare Diseases

29 June 2021, 14:00 Paris time

National Alliances, from across the WHO European region, as well as other WHO regions, are invited to take an active lead in shaping the design of the WHO CGN4RD. Please sign up to the webinar to find out more and to start shaping the Global Network!

Closed webinar for CNA members. Please contact Anja Helm to register.

Deep-dive into integration of ERNs : Part I

EURORDIS is organising on July 1st a series of webinars to look into 3 key areas that are relevant to benefit from ERNs at national level. We have invited experts to discuss 3 topics: Accreditation of Centres of Expertise, National Networking and Referral systems.

Action at national level on ERNs requires joint action with a patient community that speaks with one voice. For this reason, these webinars will be open to all EURORDIS members and ePAG advocates.

Please register here for the webinars that will take place on July 1st 14.00-17.30 CET

You can find the event agenda here.

Please read the ERNs Board of Member States statement on integration ahead of the workshop and its annex.

Contact: Ines Hernando –

2nd CEF informal workshop

6 Jul 2021, 15:00 Paris time

Sharing challenges, experiences, ideas and best practices from the different federations, and define areas on which we could potentially work together.

Closed webinar for CEF members. Please contact Anja Helm to register.


External webinars with EURORDIS speakers

Check back soon for more events 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: 14/06/2021
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases