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:

Findacure is launching 2nd round of peer mentoring programme

L’ARSLA lance son premier concours de recettes adaptées aux patients atteints de SLA.

Déposez dès maintenant votre recette ! Pour tout savoir sur le concours : rendez-vous ici

July 2017

3rd World CDG Conference

15-16 July 2017, Leuven, Belgium, more information

August 2017

Ring 20 Research Support UK Family Conference 2017

4 - 6 August, Liverpool, UK, more information

'Developing Medical Guidelines' Webinar

15 August, register here

The Cambridge Rare Disease Showcase with Findacure

24 August, Cambridge, UK, register here

September 2017

Findacure Working with Industry Workshop

8 September, london, tickets here

Walk´n Roll 2017

9 September, Vanløse, Denmark, more information

Presentación de la Novela Once rosas rojas y una amarilla

25 de Septiembre, Sevilla, España,

International Ataxia Research Conference

27-30 September 2017, Pisa, Italy,

October 2017


7-8 October 2017, Dublin, Ireland, more information

Childhood Cancer International Survivors Network Annual Conference

12-15 October 2017, Washington D.C, USA, register here

November 2017

First European ATTR Amyloidosis Meeting for patients and doctors

2-3 November 2017, Paris,

CMTC-OVM annual global conference

3-4 November 2017, Leusden, Netherlands,

International Primary Immunodeficiencies Congress (IPIC) 2017

8-10 November 2017, Dubai, UAE,

14th International Conference on Thalassaemia & Haemoglobinopathies & 16th TIF International Conference for Patients & Parents

17-19 November 2017, Thessaloniki, Greece, more information

The Batten Disease Family Association conference

24-26 November 2017, Stratford Upon Avon, UK,

January 2018

European SMA conference, “SMA: research and clinical symposium”

25-27 January 2018, Poland,

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: 16/08/2017
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