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: www.whatifyourbaby.org

Findacure is launching 2nd round of peer mentoring programme

www.findacure.org.uk

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 www.arsla.org


February 2017

Presentación y proyección del documental "Respira"

2 February 2017, Cineteca del Matadero de Madrid (Plaza de Legazpi, 8, 28045. Madrid) www.beeableproject.com

L'Assemblée Générale des Enfants de la Lune, Association pour le Xeroderma Pigmentosum (AXP)

4 February 2017, Bellegarde-sur-Valserine, France, www.enfantsdelalune.org

IF Youth Group meeting alongside the Yo Fest

7 February 2017, Maastricht, www.ifglobal.org

XV conferenza internazionale sulla distrofia muscolare di Duchenne e Becker

17–19 February 2017, Ergife Palace Hotel, Roma, more information

Drug Repurposing for Rare Diseases Scientific Conference 2017

28 February 2017 (to mark Rare Disease Day 2017), London, more information


March 2017

6th AKU Patient Workshop

18 March 2017, London, www.akusociety.org

Journée ALIS (Association du Locked-in Syndrome)

24 March, Boulogne Billancourt, France www.alis-asso.fr


April 2017

Tagung Usher Taubblind Forum Österreich

21 April 2017, Informations- und Vernetzungsveranstaltung, mehr Infos unter:  usher-taubblind.at

Run the London Marathon for AKU

23 April 2017, London, UK, more information


May 2017

Assemblée Générale Annuelle de  l'association Les Ptits Courageux

1 May, Saint Pardoux, www.lesptitscourageux.net

European members’ workshop (focus on good practices and proposal writing skills)

26-28 May 2017, Madrid, www.ifglobal.org


June 2017

BDFA Starlight Ball 

9 June (awareness day), Hampshire, UK, more information and tickets


July 2017

3rd World CDG Conference

15-16th July 2017, Leuven, Belgium, more infromation


September 2017

International Ataxia Research Conference

27-30 September 2017, Pisa, Italy, iarc2017@eurotraining.it


October 2017

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

October/November 2017, Germany, more information


November 2017

International Primary Immunodeficiencies Congress (IPIC) 2017

8-10 November 2017, Dubai, UAE, www.ipic2017.com

The Batten Disease Family Association conference

24th-26th November 2017, Stratford Upon Avon, UK, www.bdfa-uk.org.uk


January 2018

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

25-27 January 2018, Poland, www.sma-europe.eu




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: 23/02/2017
 
 
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