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.


March 2020

Encuentro Asociativo Federacion ASEM

19-21 March, Centro CREER, Burgos, Spain, more information

Journée Fructos'Amis pour la Vie

21 March, Marseille, France, more information

Assemblée Générale Association Bernard Pépin

27 March, Paris, France, more information Event cancelled due to COVID-19, please see website for updates on rescheduled date


April 2020

Maladies rares et Thérapies Complémentaires

24 April, Paris, France, more information

The European IPF Patient Summit

24-26 April 2020, Warsaw, Poland, more information Event has been postponed due to COVID-19, new dates tbc


May 2020

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

8 May, Lille, France, more information

OIFE Annual General Meeting

8-10 May, Valencia, Spain, more information

2020 Living Rare, Living Stronger NORD Patient and Family Forum

14-16 May, Cleveland, Ohio, USA, more information Event tentatively rescheduled to 18-20 July 2020 due to COVID-19

Europäische Familienkonferenz für Menschen mit Zentronukeären Myopathien

21-24 May 2020, Bad Nauheim, Germany, more information

EHC Conference on Women and Bleeding Disorders

29-31 May 2020, Basel, Switzerland, more information


June 2020

European Polio Union – 2020 Annual General Meeting

10-12 June, Vitoria, N. Spain, more information

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

26 June, Paris, France, more information


July 2020

12th Annual Usher Syndrome Coalition USH Connections Conference

10-11 July 2020, Austin, Texas, USA, more information


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

CMP yearly symposium

17 October, Bruges, Belgium, more information

34th E.S.PKU Conference 2020

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


November 2020

THE INTERNATIONAL SYNGAP1 CONFERENCE AND FDA PFDD SYNGAP1: Patient Voices

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

The International Netherton Conference

26-27 November, Rotterdam, Netherlands, 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: 26/03/2020
 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases