Member news and announcements

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


The International Gaucher Alliance, a global umbrella group representing over 85% of the global Gaucher community is seeking a new Communications and Campaigns officer and projects Officer to join their team. For more information email admin@gaucheralliance.org for a job description and application form.

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


June 2021

La Course des Héros 2021

June, online, more information

8th annual Drug Repurposing for Rare Disease Conference

15-16 June 2021, online, more information

2021 International Tuberous Sclerosis Complex Research Conference: A Vision for the Future

17-19 June 2021, online, more information

18. PKD-Symposium ONLINE

19 June 2021, online, more information

Webinar:Twin Talks: Twin Anemia Polycythemia Sequence 101

29 June 2021, online, more information


July 2021

ELF Long-COVID Patient Conference

10 July 2021, online, more information

BDSRA's 2021 Family Conference

23-25 July 2021, online, 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
anja.helm@eurordis.org


 

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
anja.helm@eurordis.org
 


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
anja.helm@eurordis.org

 


 

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

E-mail
Anja Helm
Senior Manager of Relations with Patient Organisations
anja.helm@eurordis.org

 

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
anja.helm@eurordis.org

 


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
anja.helm@eurordis.org

 

Page created: 03/12/2009
Page last updated: 15/06/2021
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases