Member news and announcements

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

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

July 2020

Online campamento de verano para niños y niñas con enfermedades neuromusculares

4-11 July, online, more information

12th Annual Usher Syndrome Coalition USH Connections Conference

10-11 July 2020, Austin, Texas, USA, more information Event postponed to July 2021 due to COVID-19

September 2020

EEC Sindrome: Ricerca e Confronti

10-12 September, Padova, Italy, more information

Fourth Annual SYNGAP1 Golf Classic and Silent Auction

17 September, Cypress, Texas, USA, more information

October 2020

Journée Sclérose Tubéreuse de Bourneville

3 October, Hospital Necker, Paris, France, more information

Rare Diseases and Orphan Products Breakthrough Summit

October 8-9, Washington, D.C, USA, more information


16-18 October, Peschiera del Garda, Italy, more information

20 riunione nazionale dei Pazienti: Fondazione Italiana HHT “Onilde Carini” - Evento On-line

17 October, more information

CMP yearly symposium

17 October, Bruges, Belgium, more information

CMTC-OVM  Members Conference

24 October, more information

34th E.S.PKU Conference 2020

29 October - 1 November, Madrid, Spain, more information

Association Française des Hémophiles- Journée nationale des autres troubles rares de la coagulation

30 October, Lille, France, more information

November 2020


19 November 2020, Rockville, Maryland, USA, more information

XI All-Russian Congress of Patients "Development Vector: Patient-Oriented Health Care"

26-29 November, online, more information

The International Netherton Conference

26-27 November, Rotterdam, Netherlands, more information

March 2021

1ère Journée de rencontre des familles, cliniciens, chercheurs autour du syndrome de White-Sutton

Paris, France, more information

April 2021

20th International Vasculitis and ANCA Workshop

18-21 April 2021, Dublin, 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: 02/07/2020
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