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

October 2016

OI in 2016 – Latest Developments in Osteogenesis Imperfecta

6-8 October 2016, Lisbon, Portugal, more information

FOP France - Séminaire international - Reunion des familles

8-9 octobre 2016, Paris, France, programme

La Recherche Clinique et le développement du médicament : Tous acteurs !

11 octobre 2016, Institut Imagine, Paris, France, programme

La malattia di Lesch-Nyhan: nuove prospettive nella descrizione e nell'approccio diagnostico,terapeutico e assistenziale

15 ottobre 2016, Siena, Italia, ulteriori informazioni

Webinar: “Involving patients and patients groups in clinical research”

19 october 2016, Ataxia, UK, register here

Rare Disease Expo ''RareX"

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

November 2016


5 November 2016, Cinema Teatro Trieste, Milan, Italy, more information

Всероссийский союз пациентов сообщает о

9 -10 ноября 2016 года в Москве, VII Всероссийского Конгресса пациентов.

CMTC Annual global member meeting

12 November 2016, Leidsen, Netherlands, programme

Batten Disease Family Association

18-20 November 2016, Stratford-upon-Avon, UK, programme

PWSA UK national Conference 2016 

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

April 2017

Run the London Marathon for AKU

23 April 2017, London, UK, 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: 20/10/2016
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