- A propos d'EURORDIS
- Les Maladies Rares
- Politique de l’UE
- Médicaments Orphelins
- Qu'est ce qu'un «médicament orphelin» ?
- Encourager la mise au point de nouveaux medicaments
- Désignation des médicaments orphelins
- Rendez vos médicaments plus sûrs
- Le rôle d'EURORDIS
- L’implication des représentants des patients
- Accès aux médicaments orphelins
- Évaluation des technologies de la santé
- Consultez les dernières désignations et autorisations de mise sur le marché de médicaments orphelins
- Vivre avec une Maladie Rare
- Services aux Patients
- Pour se former
- Actualités & Evènements
Actualités & évènements
Découvrez les actualités de notre communauté sur les maladies rares !
Découvrez l’actualité de nos membres
Members’ news and announcements
Eurordis member groups are welcome to send news and announcements to be published on this page.
International Painful Bladder Foundation (IPBF)
The IPBF has pleasure in providing you with a review of the
JOINT MEETING OF THE 3rd INTERNATIONAL CONSULTATION ON INTERSTITIAL CYSTITIS JAPAN (ICICJ 3) AND THE ESSIC ANNUAL MEETING 2013, held in Kyoto, Japan, 21-23 March 2013.
05/2013
IV° Congresso Incontro Medici Famiglie sulla Sindrome Nefrosica Idiopatica organizzato da A.S.N.IT onlus
4 Maggio 2013 nella sala Plenaria presso l’Hotel Universo, Via Principe Amedeo,5 Roma con il patrocinio del Comune di Roma, Provincia di Roma, Regione Lazio e delle Società Italiane di Nefrologia SIN e nefrologia pediatrica SINP.
Programma
Associazione Sindrome Nefrosica Italia
International Thalassaemia Day - 8th May 2013
“The right for quality health care of every patient with thalassaemia, major and beyond.”
More information
www.thalassaemia.org.cy
Journée mondiale du lupus
10 mai 2013 à Toulouse - Salle Jean Mermoz
Plus d'informations
Festeggiamo la giornata mondiale ring14 con cena di Gala dai Liffi!!!
Venerdi’ 17 maggio ore 20,30
Presso l'Associazione culturale "La Congrega dei Liffi " in via Prampolini, 45/a - Quattro Castella (RE)
Per informazioni e prenotazioni: info@ring14.it - ring14.org
24. Kleinwuchsforum
9-12. Mai 2013
Hessen Hotelpark Hohenroda
www.bkmf.de
Congrès national de l'AFH 2013
Le prochain Congrès national de l’Assocation Française des Hémophiles aura lieu du 24 au 26 mai 2013 à Saint-Etienne-du-Rouvray, commune toute proche de Rouen
Plus d'informations
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/
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.
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
Découvrez les derniers événements internationaux en lien avec les maladies rares
International rare disease events
May 2013
7th Alstrom Syndrome International Family Conference and Scientific Symposium
9-13 May, Massachusetts, USA, alstrom.org
IMI (Innovative Medicines Initiative) Stakeholder Forum 2013
Public-private partnerships for health research and innovation
13 May, Brussels, Belgium, /www.imi.europa.eu/
International Meeting of Porphyria Patients
Saturday, 18th of May 2013 in Lucerne, Switzerland, www.porphyrinsandporphyrias.org/
Autoinflammation 2013: 7th International Congress of the International Society of Systemic Auto-Inflammatory Diseases
22- 26 May, Lausanne, Switzerland www.autoinflammation2013.com
EUROPLAN National Conference in Romania, under the auspices of the Romanian Health Ministry - An event organized under the auspices of the Romanian Health Ministry
24 -25 May, Hotel IBIS PARLAMENT Bucharest www.eurordis.org/eu-rare-disease-policy#tabs-2
1st Congress of the Congolese Society for Human Genetics (CoSHG)
27-29 May, Kinshasa, Republic of Congo www.coshg.org
EURORDIS Membership Meeting 2013 Dubrovnik
May 30 – June 1st, 2013, Dubrovnik, Croatia http://www.eurordis.org/content/membership-meetings
June 2013
4th International DSD (Disorders of Sex Development) Symposium
7-9 June, Glasgow, Scotland http://www.gla.ac.uk
12th European Symposium on Congenital Anomalies
12-14 June, Zagreb, Croatia www.eurocat2013.com
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/
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
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
Second Symposium on ATP1A3 in Disease: Genotype/Phenotype Correlations, modelling and identification of potential targets for treatment
23 - 24 September, Catholic University School of Medicine, Rome, Italy www.symposium-atp1a3.tk/
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
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
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
November 2013
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
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
RareConnect
Un réseau social pour les communautés maladies rares. Voici les communautés actuelles:
- Acidémie propionique
- Alcaptonurie
- Amylose
- Atrophie Multisystématisée (AMS)
- CAPS
- Cryoglobulinémie
- Cystinose
- DysNet
- Dysplasie Fibromusculaire
- Epidermolyse bulleuse
- Fibrose Pulmonaire Idiopathique
- Fièvre Méditerranéenne Familiale
- Glut1
- Hémiplégie Alternante
- Hyperlipoprotéinémie Type 1
- Hypertension Artérielle Pulmonaire
- Léiomyomatose familiale
- Maladie d'Erdheim-Chester
- Maladie de Behçet
- Maladie de Coats
- Maladie de Waldenström
- Mastocytose
- Myélome Multiple
- Narcolepsie
- Neuroacanthocytose
- Paraplégie Spastique Familiale
- Porphyrie
- Syndrome CDG
- Syndrome d'Alström
- Syndrome d'Ehlers-Danlos
- Syndrome d'Evans
- Syndrome de Dravet
- Syndrome de Moebius
- Syndrome de Rett
- Syndrome de Whim (WHIM)
- Syndrome Hemolytique Uremique Atypique
- Syndrome neurologique paranéoplasique
- Triméthylaminurie
- Von Hippel Lindau (VHL)
- Acidémie propionique
- Alcaptonurie
- Amylose
- Atrophie Multisystématisée (AMS)
- CAPS
- Cryoglobulinémie
- Cystinose
- DysNet
- Dysplasie Fibromusculaire
- Epidermolyse bulleuse
- Fibrose Pulmonaire Idiopathique
- Fièvre Méditerranéenne Familiale
- Glut1
- Hémiplégie Alternante
- Hyperlipoprotéinémie Type 1
- Hypertension Artérielle Pulmonaire
- Léiomyomatose familiale
- Maladie d'Erdheim-Chester
- Maladie de Behçet
- Maladie de Coats
- Maladie de Waldenström
- Mastocytose
- Myélome Multiple
- Narcolepsie
- Neuroacanthocytose
- Paraplégie Spastique Familiale
- Porphyrie
- Syndrome CDG
- Syndrome d'Alström
- Syndrome d'Ehlers-Danlos
- Syndrome d'Evans
- Syndrome de Dravet
- Syndrome de Moebius
- Syndrome de Rett
- Syndrome de Whim (WHIM)
- Syndrome Hemolytique Uremique Atypique
- Syndrome neurologique paranéoplasique
- Triméthylaminurie
- Von Hippel Lindau (VHL)
Nous adhérons aux principes de la charte HONcode.
Nous sommes reconnaissants pour le soutien financier du site EURORDIS par :
