Cargando…

French experience with rare diseases plans

Detalles Bibliográficos
Autores principales:	Le Henanff, Guillaume, Tchernia, Gil
Formato:	Texto
Lenguaje:	English
Publicado:	BioMed Central 2010
Materias:	Oral Presentation
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2958395/ http://dx.doi.org/10.1186/1750-1172-5-S1-O7

Ejemplares similares

Specific social challenges for rare diseases: the French experience, 2005-2014
por: Nourissier, Christel
Publicado: (2014)

Which support from the French Foundation of rare disease towards clinical trial set up in rare diseases?
por: Ravagnan, Luigi
Publicado: (2015)

Recommendations for the development of national plans for rare diseases
por: Van der Zeijden, Albert, et al.
Publicado: (2010)

The French national registry for rare diseases: an integrated model from care to epidemiology and research
por: Choquet, Rémy, et al.
Publicado: (2014)

The German plan for rare diseases: a development in progress
por: Graf von der Schulenburg, Johann Mathias
Publicado: (2010)

Evaluation of Centres: the French experience since 2009
por: Sarnacki, S
Publicado: (2014)

Update of Emerinopathies’ clinical-genetic spectrum: the French network experience
por: Leturcq, France, et al.
Publicado: (2015)

French validation of brace questionnaire
por: Deceuninck, Julie, et al.
Publicado: (2014)

French guidelines for the management of malignant hyperthermia
por: Krivosic-Horber, René
Publicado: (2014)

P468 Aspergillosis in a colony of Humboldt penguins (Spheniscus humboldti) under managed care: a clinical and environmental investigation in a French zoological park
por: Perraud-Cateau, Estelle, et al.
Publicado: (2022)

The added value of centres of expertise for rare disease patients in Europe
por: Kole, Anna A, et al.
Publicado: (2010)

O005: Results of the french national audit on standard precautions
por: Giard, M, et al.
Publicado: (2013)

The Swedish rare disease information database and the Swedish information centre for rare diseases
por: Greek-Winald, Christina, et al.
Publicado: (2010)

RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases
por: Taruscio, D, et al.
Publicado: (2014)

A common French-Italian laminopathy registry – update & future prospects
por: Bonne, Gisèle, et al.
Publicado: (2015)

Determinants for research on rare diseases
por: Palau, Francesc
Publicado: (2010)

Ageing in rare, chronic diseases
por: Smit, Cees
Publicado: (2010)

O-06: E-SICKLE CELL DISEASE: A FRENCH SPEAKING TRAINING PLATFORM TARGETING ALL LEVELS OF THE HEALTHCARE SYSTEM
por: M., COLLIN, et al.
Publicado: (2022)

Creation of a cohort of French patients with chronic recurrent multifocal osteitis : preliminary results
por: Wipff, J, et al.
Publicado: (2011)

The Biopontis Alliance Rare Disease Foundation (BARDF) – an innovative model for early stage rare disease therapy financing and development
por: Tambuyzer, Erik T, et al.
Publicado: (2014)

How to code rare diseases with international terminologies?
por: Rath, Ana, et al.
Publicado: (2014)

The importance of helplines in National Plans
por: Mazzucato, Monica, et al.
Publicado: (2014)

Contribution of rare disease patient organisations to medical education
por: von Gizycki, Rainald
Publicado: (2010)

Patient innovation under rare diseases and chronic needs
por: Oliveira, Pedro, et al.
Publicado: (2014)

Towards a European platform for Rare Diseases Registries
por: Nicholl, Ciarán
Publicado: (2014)

National Rare Disease Registries: overview from Spain
por: de la Paz, M Posada, et al.
Publicado: (2014)

The European Union Committee of Experts on Rare Diseases (EUCERD): a new committee to help the European Commission advance in the field of rare disease policy
por: Moliner, Antoni Montserrat, et al.
Publicado: (2010)

PReS-FINAL-2191: Imaging of chronic recurrent multifocal osteitis: a french national cohort of 178 cases
por: Wipff, J, et al.
Publicado: (2013)

Classification of rare diseases: a worldwide effort to contribute to the International Classification of Diseases
por: Rath, Ana, et al.
Publicado: (2010)

Use of animal models for exome prioritization of rare disease genes
por: Smedley, Damian, et al.
Publicado: (2014)

O074: EPIPA, a point prevalence survey of urinary, pulmonary and skin infections in 334 French nursing homes
por: Vincent, A, et al.
Publicado: (2013)

Individual plans and coordinated services: an empowering process
por: Aksnes, Stein Are
Publicado: (2010)

Joint Crisis Plans reduce coercive treatment
por: Henderson, Claire, et al.
Publicado: (2007)

O054: Surgical site infections (SSI) and risk factors in breast cancer surgery (BCS): French survey surviso 2011
por: Louis, M-Y, et al.
Publicado: (2013)

Knowledge on malignant hyperthermia: as rare as the disease? A nation wide survey
por: Wolvetang, Timothy, et al.
Publicado: (2014)

OrphanAnesthesia – anesthesia recommendations for patients suffering from rare diseases
por: Münster, Tino
Publicado: (2014)

Identifying specific social challenges of rare diseases: current challenges and issues
por: Dan, Dorica, et al.
Publicado: (2014)

Rare diseases and disabilities: improving the information available with three Orphanet projects
por: de Chalendar, Myriam, et al.
Publicado: (2014)

Fully automatic planning of the long-axis views of the heart
por: Hayes, Carmel, et al.
Publicado: (2013)

The present situation of Rare Diseases in Central/Eastern Europe? The role of patient organisations
por: Pogany, Gabor
Publicado: (2010)

Cannot write session to /tmp/vufind_sessions/sess_5i5g7nvbcmp34083i1cps0kh67