Cargando…

The present situation of Rare Diseases in Central/Eastern Europe? The role of patient organisations

Detalles Bibliográficos
Autor principal:	Pogany, Gabor
Formato:	Texto
Lenguaje:	English
Publicado:	BioMed Central 2010
Materias:	Oral Presentation
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2958389/ http://dx.doi.org/10.1186/1750-1172-5-S1-O30

Ejemplares similares

Can people living with a rare disease be independent? Inspiring personal stories
por: Pogany, Gabor
Publicado: (2014)

Socioeconomic determinants of medicines use in Central Eastern Europe: the role of pharmaceutical policy in reducing inequalities
por: Vogler, Sabine, et al.
Publicado: (2015)

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

Patient involvement and empowerment through the NPRD (Eastern Europe)
por: Dan, Dorica
Publicado: (2010)

Very rare disorders - organisation of care
por: Hennekam, Raoul CM
Publicado: (2010)

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

Present situation and future of genetic profiling for prognosis and treatment
por: Hortobagyi, GN
Publicado: (2005)

Outbreaks of blackflies and related problems in Serbia: past and present situation
por: Ignjatović Ćupina, A, et al.
Publicado: (2014)

Drug use, HIV, HCV and TB: major interlinked challenges in Eastern Europe and Central Asia
por: Kazatchkine, Michel
Publicado: (2014)

Feline diabetes mellitus – the Swedish situation
por: Öhlund, Malin, et al.
Publicado: (2015)

Anthelmintic resistance. An overview of the situation in the Nordic countries
por: Ihler, Carl Fredrik
Publicado: (2010)

Current epidemiological HIV/AIDS situation in Republic of Moldova
por: Pîrțînă, Lucia, et al.
Publicado: (2014)

P196 A rare presentation of subcutaneous Entomophthoramycosis
por: George, Nimmy Elizabeth, et al.
Publicado: (2022)

OA18 A rare presentation of Polyarteritis Nodosa
por: Gor, Shivani, et al.
Publicado: (2022)

P259 Rare presentations of Cryptococcosis: a case series
por: Perumalla, Sowjanya, et al.
Publicado: (2022)

A pilot study to determine the prevalence of HIV in persons presenting for care with selected conditions: preliminary results from the HIV in Europe study
por: Sönnerborg, A, et al.
Publicado: (2010)

Mapping and modeling Dirofilaria infections in Europe
por: Rinaldi, L, et al.
Publicado: (2014)

The “Podiatry Diabetes Model”- an example of an organised approach to the podiatric care of people with diabetes in regional Victoria
por: Perrin, Byron, et al.
Publicado: (2011)

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

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

State of the art of services in Europe: where are the problems?
por: Aymé, Ségolène
Publicado: (2010)

Major challenges in clinical management of TB/HIV co-infected patients in Eastern Europe compared with Western Europe and Latin America
por: Efsen, Anne Marie, et al.
Publicado: (2014)

O025: Organisational transformation – the application of novel change techniques & social media understanding to motivate infection preventionists
por: Storr, J, et al.
Publicado: (2013)

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

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

SHARE – workpackage 5: development of best practices of diagnosis and treatment for paediatric rheumatic diseases throughout Europe
por: Vastert, Sebastiaan, et al.
Publicado: (2014)

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

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

French experience with rare diseases plans
por: Le Henanff, Guillaume, et al.
Publicado: (2010)

Ten years of MRSA surveillance in Switzerland: similarities and differences with Europe
por: Olearo, F, et al.
Publicado: (2015)

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

S108: A SYSTEMATIC POST-MARKETING (PM) REVIEW OF RARE INFUSION-RELATED REACTIONS (IRRS) PRESENTING AS PAIN EVENTS DURING OR AFTER CRIZANLIZUMAB INFUSION IN PATIENTS WITH SICKLE CELL DISEASE (SCD)
por: Kanter, J, et al.
Publicado: (2022)

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)

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

Epidemiology and models of care for mentally disordered prisoners in Europe – the EUPRIS study
por: Salize, Hans Joachim, et al.
Publicado: (2007)

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

Accuracy in use of adrenalin auto-injectors in a simulated emergency situation: a comparison of JEXT, EpiPen and Emerade
por: Knibb, Rebecca, et al.
Publicado: (2015)

Why we should have more collaboration on HTA in Europe: the example of sofosbuvir
por: Schelleman, Hedi, et al.
Publicado: (2015)

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

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

Cannot write session to /tmp/vufind_sessions/sess_6jv18nkrrvvmkv4vjquecbgcl7