Member news and announcements

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


April 2022

Assemblée Générale de l' ABPMWilson

15 April 2022, online, more information

Online ADPKD Symposium PKD Familiäre Zystennieren e.V. und UKE

23 April 2022, online, more information

Webinar: Pregnancy and vascular malformations

23 April 2022, online, more information

DÍA DE LA DERMATOMIOSITIS JUVENIL

23 April 2022, more information

International Primary Immunodeficiencies Congress

27 - 29 April 2022, Portugal, more information

Taller Grupal de Logopedia

28 April 2022, online, more information

Undiagnosed Day

29 April 2022, online, more information


May 2022

Action Duchenne 2022 Science Education Programme

May 2022, United Kingdom and Ireland, more information

1st Hellenic Friedreich's Ataxia International Conference

6 May 2022, Pasteur Hellenic Institute Amphitheatre, Athens (hybrid event), more information

Wishbone Day - International Day of Osteogenesis Imperfecta

6 May 2022, worldwide, more information

AKU Scientific Conference

14 - 15 May 2022, Vrije Universiteit Brussel, Belgium, more information

Workshop: Understanding access & reimbursement

17-19 May 2022, online, more information

International Day of Porphyria patients

18 May 2022, worldwide, more information

Webinar: How to successfully recruit and manage volunteers

26 May 2022, online, more information

Familienkonferenz für Menschen mit Zentronukleären Myopathien

26 - 29 May 2022, Bad Nauheim, Germany, more information

CureCLCN4 Scientific Meeting

27 - 28 May 2022, London, UK, more information

Special Policy Webinar for the European Week Against Cancer

31 May 2022, online, more information


June 2022

Afadoc: Il XVI WORKSHOP PER LA FAMIGLIA

2 - 5 June 2022, Naples, Italy, more information

1° Congresso internazionale sulla Sindrome di Beckwith-Wiedemann

2 - 5 June 2022, Cervia, Italy, more information

6th European Aniridia Conference

3 - 5 June 2022, San Juan de Alicante, Spain, more information

Annual OIFE Educational Webinar

4 June 2022, online, more information

Jornada Nacional de Pacientes con FMF y Autoinflamatorios

4 June 2022, Spain, more information

KRIKOS ZOIS seminar

4 June 2022, hybrid, more information

International Batten Disease Awareness Day

9 June 2022, more information

Batten Disease Family Association Conference 2022

11 – 12 June 2022, Stratford-upon-Avon, England, more information

FH Europe webinar  -  EAS 2022 Congress highlights

15 June 2022, online, more information

Beacon webinar: Growing your team, employing staff to drive your organisation towards its goals!

23 June 2022, online, more information


July 2022

The Cambridge Rare Disease Showcase

6 July 2022, Cambridge, England, more information

11th International Prader-Willi Syndrome Organisation Conference!

6 – 10 July 2022, University of Limerick, Ireland, more information

3rd CNE International Cystinosis Conference

7 - 10 July 2022, Leuven, Belgium, more information

In-person workshop | Demonstrating impact: the key to a successful rare disease patient group

13 July 2022, London, England, more information


September 2022

PKD-Symposium

2 - 3 September 2022, Leipzig, Germany, more information

Conference: Caring for Care

9 - 10 September 2022, Belgrade, Serbia, more information

6th Cutis Laxa Days

14 - 16 September 2022, Ghent, Belgium, more information

NBIA-Familienkonferenz 2022

16 - 18 September, Heilbronn, Germany, more information


October 2022

3rd SMA scientific congress

21-23 October 2022, Barcelona, more information


November 2022

3rd International Muscle-Bone Interaction in Duchenne Muscular Dystrophy Symposium

3 November and 14 November 2022, online, more information

33 CONGRESO NACIONAL DE ENFERMEDADES NEUROMUSCULARES

4-5 November 2022, Madrid, Spain, 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: 07/06/2022
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS 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