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.


August 2021

Mes Internacional de Concienciación de los Autoinflamatorios

August 2021, online, more information


September 2021

Usher 1B Virtual Workshop

13 September 2021, online, more information

Launch of Myhre Syndrome Foundation International Research Grant Program

13 September 2021, more information

PKD European Patients Day

18 September 2021, online, more information

CMTC-OVM Webinar: Management of your child's health

18 September 2021, online, more information

11. Österreichischer Kongress für Seltene Krankheiten Innsbruck

24 - 25 September 2021, more information

Free Webinar: Long Term Effects of Twin Anemia Polycythemia Sequence

28 September 2021, online, more information


October 2021

CTF Europe - INFER Masterclasses in NF - NF1 Cutaneous Neurofibromas

6 October 2021, online, more information

RAREsummit21

7 October 2021, online, more information  

WAPO eSummit 2021

8-9 October 2021, online, more information

The Twin Run

8-10 October 2021, Netherlands, more information

Fragile X France - Conférences scientifiques dédiées aux familles

9 October 2021, online, more information

Fundación ALPE Acondroplasia - Congreso ALPE en torno a las ADEE

9-11 October 2021, Gijón, España, more information

INFER Masterclasses in NF – NF1 Malignant Peripheral Nerve Sheath Tumors

25 October 2021, online, more information

CMTC-OVM  annual worldwide members' conference

30 October 2021, online, more information


November 2021

CTF Europe  - INFER Masterclasses in NF – NF1 Orthopedic Manifestations

9 November 2021, online, more information


December 2021

Marche des Maladies Rares

4 December 2021, Paris, France, more information

CTF Europe  - INFER Masterclasses in NF – NF1 Associated Glioma in Children - the Optic Pathway and Beyond

10 December 2021, online, more information


June 2022

Batten Disease Family Association Conference 2022

11 – 12 June 2022,  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: 16/09/2021
 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.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 Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases