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

IBTA

The Brain Tumour Patients’ Charter of Rights launched, more information

Union Nationale des Syndromes d'Ehlers-Danlos

Publication du 1er  PNDS (Protocole National Diagnostic et de Soins) pour les  Syndromes d’Ehlers-Danlos Non Vasculaires en France, more information

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

XVI WORKSHOP AFaDOC PER LA FAMIGLIA
FAMIGLIE IN CAMPO: LE REGOLE DEL GIOCO

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

THE INTERNATIONAL SYNGAP1 CONFERENCE AND FDA PFDD SYNGAP1: Patient Voices

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
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: 03/07/2020
 
 
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