Members’ 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.

Get Your Happy On

Rare Diseases South Africa (RDSA) has started a social media initiative encouraging people with a rare disease, family members, loved ones and friends to post a picture about something that made them happy each day, for 100 days. Remember to hashtag #100DaysOfRare, #RareAndHappy and tag them @RarediseasesSA on their Facebook and Twitter.
More Information

Multi-national portal to provide advice and support services for the parents of children born with limb disabilities

Dysnet, the Online Dysmelia Community, has launched a multi-national portal to provide advice and support services for the parents of children born with limb disabilities:

Appel à Projets de l'Association Française du Syndrome de Rett

Dépôt des dossiers avant le 15 avril 2016
Plus d'informations


April 2016

Gala de Charité de l'APIPD

1 April 2016, Chalet du Lac, Bois de Vincennes, France
More information

Rencontres Nationales Association Française du Syndrome d'Angelman

2 April 2016, FIAP Jean Monnet, Paris
Plus d'informations 

3rd European Days of Albinism

7-8 April 2016, Palazzo Lombardia 1, Milano, Italy
More information

Les Journades Cientfiques 2016 d'ASEM CATALUNYA

8- 9 April 2016, AL PRBB C/Doctor Aiguadar 88E, Barcelona
More information 

9th International Conference of the European Chromosome 11 Network 

8-10 April 2016, Pforzheim-Hohenwart Forum, Germany
More information

CORRI X PADOVA ospiterà "CORRIperMANO" ostieni il progetto anti bullismo 

14 April, 2016, Padova, Italy
More information

10th International Meeting F.O.P

Fibrodisplasia Osificante Progresiva, PDF
15-16 April 2016, Livorno, Italy
More information

EHC World Haemophilia Day Event

20 April 2016, Brussels  
More information

III Congreso Escolar Internacional sobre Enfermedades Raras

Construyendo redes, consolidando proyectos, hacia una sociedada inculsiva.
20-21 April 2016, Bizkaia Aretoa paraninfo UPV/EHU, Bilbao 
More information 

Findacure: Sustainable Development Workshop for Small Rare Disease Charities 

22 April 2016, London 
More information

May 2016

5èmes Journées de la Cutis Laxa

5-8 May, Annecy 
More information

Assemblée Générale 2016 de l'Association Les P'tits Courageux

6 Mai, 2016, Saulx-Marchais, France
More information

'Together even stronger!' : Family Conference on myotubular and other centronuclear myopathies 

7-8 May, 2016, Frankfurt, Germany 
More information

44e Congrès national de l'AFH

14-15 May 2016, Cité des sciences et de l'industrie, Paris 
Plus d'informations

FOP Friends UK Conference and Family Gathering 

21 May 2016, Manchester, Radisson Blu Airport Hotel, United Kingdom
More information

APIPD- Assemblée Générale Ordinaire

21 May 2016, l’Auditorium de l’Hôtel de Ville de Paris, France 
More information

Carrera contra la Laminopatia 

22 May, Parque Juan Carlos I, Madrid
More information

June 2016

EHC Round Table on HCV and Haemophilia

14 June 2016, Brussels, Belgium 
More information  

10th CHARGE Konferenz

17-19 June 2016, Oberwesel, Germany
More information 

Findacure's training series for small rare disease patients groups

24 June 2016, London, UK 
More information

July 2016

14th International Symposium on MPS and related diseases

14-17 July 2016, Bonn, Germany (Abstract submission can be made from 16 November 2016 via the webpage)
More information

1.tes Symposium für seltene, chronische Skeletterkrankungenan der BGU-Murnau

23 July 2016, Germany
More information

August 2016

Chromosone 18 Resgistry and Research Society (Europe) 4th Family Conference

5-7 August 2016, Rome, Italy
More information

October 2016

Rare Disease Expo ''RareX"

19-22 October 2016, Cape Town, South Africa
More information

November 2016

PWSA UK national Conference 2016 

19-20 November 2016, The Hayes Conference Centre, Swanick, Derbyshire DE55 1AU
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

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



Diese Seite ist für Nachrichten, Ereignisse und Anzeigen von Eurordis Mitgliedern.

Anja Helm
Senior Manager of Relations with Patient Organisations


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


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


Page created: 03/12/2009
Page last updated: 12/05/2016
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 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