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


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


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


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


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


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


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

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Anja Helm
Senior Manager of Relations with Patient Organisations



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Anja Helm
Senior Manager of Relations with Patient Organisations


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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


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Anja Helm
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Page created: 03/12/2009
Page last updated: 07/06/2022
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases