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


April 2017

World Haemophilia Day

19 April 2017, more information

Tagung Usher Taubblind Forum Österreich

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

APIPD Gala de Charité

21 April 2017, Saint-Ouen, France, more information

Relais 22 - journée d’information familiale

22 April 2017, Bruxelles, www.relais22.be

Run the London Marathon for AKU

23 April 2017, London, UK, more information

Engaging your community for fundraising' workshop

28 April 2017, London, UK, more information


May 2017

Assemblée Générale Annuelle de  l'association Les Ptits Courageux

1 May 2017, Saint Pardoux, www.lesptitscourageux.net

The Cardiff Rare Disease Showcase

4 May 2017, Cardiff, Wales, more information

Uniti per le RASopatie

10 May 2017, Rome, Italy, www.angelinoonan.it

XII Encuentro Nacional de Familias MPs

12-13 May 2017, Logroño, Spain, www.mpsesp.org

Organisation for Anti-Convulsant Syndrome Charity Reception

14 May 2017, Watford, UK, www.oacscharity.org/oacs-reception 

Organisation for Anti-Convulsant Syndrome Charity Fundraising Gala 

14 May 2017, Watford, UK, www.oacscharity.org/gala

II Carrera contra la laminopatía

21 May 2017, Madrid, more information 

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

EHC Round Table on Orthopaedic Aspects in Haemophilia Care

27 June, Brussels, Belgium, view the programme here


July 2017

3rd World CDG Conference

15-16 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

7-9 October 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

24-26 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: 27/04/2017
 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Созданная по инициативе EURORDIS сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Созданная по инициативе EURORDIS социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases