Member news and announcements

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

February 2022

The International Rare Disease Showcase

1 - 3 February 2022, online, more information

Webinar “Barriers to Diagnosis: Women and X-linked Diseases

8 February 2022, online, more information

Journée annuelle de l'Association Noonan

12 February 2022, Paris, France, more information

Overgrowth and vascular malformations Webinar

12 February 2022, online, more information 

March 2022

CMT France - 31st Congress (in person)

19 March 2022, Saint-Malo, France, more information

Webinar on parental experiences of vascular malformations

26 March 2022, online, more information

Dravet Syndrome Conference 2022

31 March 2022, Madrid, more information

April 2022

European Dravet Syndrome Advanced Therapies Meeting

1 April 2022, Madrid, more information

Reunión Anual de Familias 

2 April 2022, Madrid, more information

IPWSO Summit on Newborn screening for Prader-Willi Syndrome and other chromosome 15 abnormalities

3 April 2022, online, more information

International Primary Immunodeficiencies Congress

27 - 29 April 2022, Portugal, more information

June 2022


2 - 5 June 2022, Naples, Italy, more information

Batten Disease Family Association Conference 2022

11 – 12 June 2022, Stratford-upon-Avon, England, 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: 25/01/2022
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