Member news and announcements

EURORDIS member groups are welcome to send news and announcements to be published on this page.


SMA Europe is hiring a senior Operations Manager

Deadline: 25/04/2021 - Learn more

Does your association have an event to communicate? Send us your news.

April 2021

RaDiOrg  Edelweiss Awards 2021

April-June 2021, online, nominate

EDS ECHO Event Series: Pain Management – A European Pain Perspective

24-25 April 2021, online, more information

Global 2021 CDH Conference

28 - 30 April 2021, online, more information

International Gaucher Alliance (IGA)  - Bone Disease Webinar

29 April 2021, online, more information

VI Congreso Educativo sobre Enfermedades Rara

30 April 2021, online, more information

May 2021

Presente y futuro del desarrollo de tratamientos para distrofia miotónica tipo 1

12 May 2021, online, more information


21-23 May 2021, Peschiera del Garda, more information

EDS ECHO Summit Series virtual event focused on the Rarer Types of Ehlers-Danlos Syndromes

29 May 2021, online, more information

June 2021

La Course des Héros 2021

June, online, more information

Congrès de l'Alliance Maladies Rares

4 - 11 June, online, more information


11-13 June, Peschiera del Garda, more information

July 2022

11th International Prader-Willi Syndrome Organisation Conference!

6 – 10 July 2022, University of Limerick, Ireland, more information


This page is reserved for news, events & announcements concerning Eurordis’ member organisations.

To submit your announcement, e-mail:
Anja Helm
Manager of Relations with Patient Organisations


Cette page est réservée aux actualités, événements et annonces des membres d’Eurordis.

Merci d’envoyez votre annonce à:
Anja Helm
Manager of Relations with Patient Organisations

Esta pagina esta reservada para anuncios y acontecimientos de los miembros d’Eurordis.

Por favor, mande su anuncio por e-mail a:  
Anja Helm
Senior Manager of Relations with Patient Organisations



Diese Seite ist für Nachrichten, Ereignisse und Anzeigen von Eurordis Mitgliedern.

Anja Helm
Senior Manager of Relations with Patient Organisations


Esta página está reservada a notícia

s, acontecimentos e anúncios relativos às organizações associadas da EURORDIS.

Envie o seu anúncio por correio electrónico para
Anja Helm
Responsável pelas Relações com as Organizações de Doentes da EURORDIS


Questa pagina è riservata a notizie, eventi e avvisi di attività organizzate dai membri di EURORDIS.

Per presentare il vostro annuncio:

Indirizzo e-mail:
Anja Helm
Direttrice delle relazioni con le Organizzazioni di Pazienti


Page created: 03/12/2009
Page last updated: 19/04/2021
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