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Actualidades e Acontecimentos
Descubra as últimas notícias da comunidade de doenças raras!
Veja as últimas notícias e os mais recentes acontecimentos publicados pelos nossos membros
Members’ news and announcements
EURORDIS member groups are welcome to send news and announcements to be published on this page.
05/2013
EURORDIS Membership Meeting
Every year EURORDIS organises its Membership Meeting in a different European city. This is an occasion for patient representatives to gather and learn from each other.
More information
IV European Myasthenia Gravis Association (EuMGA) Annual Meeting and General Assembly, May 30, 2013, Dubrovnik, Croatia.
The meeting will take place under Eurordis patronage, as a satellite event of the Eurordis Membership Meeting EMM-2013, at Hotel Rixos, Dubrovnik and will be open to all Myasthenia Gravis Patient Organizations in Europe, for lectures, presentations, networking and discussions on common projects. The MG Online Community, part of Rare Connect Project will be launched during this event.
www.eumga.eu
06/2013
50ème Assemblée Générale Statutaire de l'Association Nationale des Cardiaques Congénitaux
samedi 1er juin 2013
Quel avenir pour les cardiaques congénitaux, enfants et adultes ?
Salle Lamartine - Immeuble Jacques Chaban-Delmas - 101 rue de l'Université 75007 Paris
Plus d'informations
Constituting General Assembly of FEDERG (Federation of European Associations on Renal Genetic Diseases)
Friday 7th of June 14h00-17h00 at the Clinique St Luc of Brussels
More information
3ème Symposium OI
Samedi 8 juin 2013
Lac de Bienne, CH
http://www.svoi-asoi.ch/
Programme : français - allemand
3. Duchenne Symposium
Freitag 14. Juni 2013, 11.00 bis 17.00 Uhr
Tagungshotel NewLivingHome
Julius-Vosseler-Strassre 40, Hamburg
www.deutsche-duchenne-stiftung.de
DREPACTION - concert géant au Zénith de Pars le 16 juin
La drépanocytose est la première maladie génétique en France et dans le monde. Elle entraîne des crises et des douleurs indescriptibles voire une mort prématurée. Afin d’aider à la lutte contre cette terrible maladie, une vingtaine d’artistes vont se succéder sur la scène du Zénith de Paris, le dimanche 16 juin à partir de 17h.
Plus d'informations
25 - 26 June: Curso de verano sobre enfermedades raras de la UP
Palacio Miramar de Donostia
Descarga aquí la documentación de la matrícula
Accede al programa del curso
09/2013
The 1st World Conference on Congenital Disorders of Glycosylation for Families and Professionals : a booming story of sugar trees
12th International Congress on Inborn Errors of Metabolism (ICIEM)
1-2 September Barcelona, Spain http://www.iciem2013.com/
Satellite Symposium : International Symposium on Urea Cycle Disorders (UCD): Catalyzing New Therapeutic Approaches http://www.iciem2013.com/
20th NPDG (UK) Annuak Family Conference
20-22 Septembre
Niemann-Pick Disease Group UK
The Thistle Haydock Hotel, Penny Lane, Merseyside
More information
Roll'Solidaire
28 septembre 2013, Bois de Boulogne.
La Roll’solidaire réunit plusieurs centaines de participants pour un défi de collecte et une randonnée solidaire de 8 km en roller, trottinette, marche, course à pied au bois de Boulogne, le 28 septembre prochain.
Plus d'informations
11/2013
ACHSE-Mitgliederversammlung 2013
Die diesjährige ACHSE Mitgliederversammlung findet am 15. November 2013 in Bonn statt.
Die Einladung mit weiteren Information zu Programm, Unterkunft und Vorstellung der Organisationen, die einen Mitgliedsantrag bei der ACHSE stellen, erhalten Sie zeitnah zur Veranstaltung.
01/2014
7ème Assises Nationales des MICI
Au fil de leurs six premières éditions, les assises des MICI se sont imposées comme un rendez-vous annuel original d’échanges pratiques et scientifiques du monde associatif et médical, hospitalier comme libéral, investi dans les MICI.
Plus d'informations
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
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
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
Author: EURORDIS
photos © Eurordis
Veja os últimos acontecimentos sobre doenças raras a nível internacional
International rare disease events
June 2013
World Orphan Drug Congress Asia
18 June, Singapore http://www.terrapinn.com
6th International Conference on Children's Bone Health
22-25 June, Rotterdam, Netherlands http://www.iccbh.org
DIA 2013 49th Annual Meeting: Advancing Therapeutic Innovation and Regulatory Science
23-27 June, Boston, USA, www.diahome.org
Fifth BHD Symposium-Second HLRCC Symposium in Paris
June 28 - 29, 2013, www.BHD-HLRCC-sympo2013.com
July 2013
MYASTHENIA 2013 International Conference (supported by the FIGHT-MG network and the French Association against Myopathies)
1-2 July, Paris, Pasteur Institute, France /www.myasthenia2013.com/
Public Conference on Therapeutic Strategies for Leukodystrophies
2 July, Berlin, Germany www.leukotreat.eu/
International Summer School for Clinical practice guidelines on rare diseases (free course)
8-12 July 2013, Istituto Superiore di Sanità, Rome, Italy www.iss.it
5 places available for patient representatives Deadline for application: 8 May
Haemophilia centres certification system across Europe
11 July, Rome, Italy www.euhanet.org/
8th International Prader-Willi Syndrome Conference
17-21 July, Cambridge UK ipwso.org
20th International Scientific Meeting of the Velo-Cardio-Facial Syndrome Educational Foundation
18-21 July, Dublin, Ireland www.22q11ireland.org
September 2013
International Congress of Inborn Errors of Metabolism
3-6 September, Barcelona, Spain www.iciem2013.com
Orphan Drugs Summit 2013
11-13 September, Copenhagen, Denmark www.orphandrugssummit.com
10 complimentary tickets available for patient organisations
2nd Conference of 'EB-CLINET - Clinical Network of EB Centres and Experts'
17-18 September, Salzburg, Austria http://www.eb-clinet.org
Second Symposium on ATP1A3 in Disease: Genotype/Phenotype Correlations, modelling and identification of potential targets for treatment, Catholic University School of Medicine, Rome, Italy
23 - 24 September, Catholic University School of Medicine, Rome, Italy www.symposium-atp1a3.tk/
1st Iberoamerican Conference on Rare Diseases
24 - 25 September, Brasilia, Brasil www.congressoiberoamericanodedrs.blogspot.com.br/
October 2013
Mitochondrial Disease: Translating biology into new treatments
2-4 October, Cambridge, UK
7th Annual Sickle Cell and Thalassaemia Conference
3-5 October, London, UK /www.guysandstthomasevents.co.uk
Annual EHC Conference – European Haemophilia Consortium
4-6 October, Bucharest, Romania www.ehc.eu
ESH International Conference on Multiple Myeloma
4-6 October, Dublin, Ireland, http://www.esh.org
The 10th Balkan Congress of Human Genetics and 2nd Alps Adria Meeting on Human Genetics (AABC2013)
10-12 October, Bled, Slovenia www.bledgenetics2013.com/
3rd European Rett Syndrome Conference Maastricht
17-19 October, Maastricht, The Netherlands, www.erscm.eu
Orphan Drug and RareDisease Seminar: “Accelerating Access to Therapeutic Innovation” (Jointly organised by Eudipharm, F-CRIN, OrphanDev)
17-18 October, Marseille, France www.fcrin.org
Thalassemia International Federation World Congress
19-23 October 2013, Abu Dhabi www.tif2013.org
World Cord Blood Congress IV and Innovative Therapies for Sickle Cell Disease
24-27 October, Monaco, Principauté de Monaco www.esh.org
November 2013
8th International Conference on Rare Diseases and Orphan Drugs – ICORD 2013:” Building Global Bridges for Rare Diseases Research and Orphan Product Development”
1-2 November, Saint Petersburg, Russia icord.se
First International Primary Immunodeficiencies Congress (IPIC)
7-8 November, Estoril, Portugal, http://www.ipic2013.com/
4th Annual World Orphan Drug Congress Europe
14-15 November, Geneva, Switzerland, www.terrapinn.com
January 2014
EFGCP Annual Conference 2014: Benefits and Risks of Research: How Do We Redress the Current Imbalance?
8 - 29 January, Brussels, Belgium www.efgcp.eu
March 2014
2nd International Congress on Research of Rare and Orphan Diseases RE(ACT) Congress 2014 to be held at in
5 – 8 March, Basel, Switzerland, react-congress.org
May 2014
7th European Conference on Rare Diseases & Orphan Products
8-10 May, Berlin, Germany
July 2014
XIIIth International Congress on Neuromuscular Diseases (ICNMD)
5-10 July 2014, Nice, France icnmd2014.org
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