Cargando…

European Reference networks for rare diseases: what is the conceptual framework?

With the Cross-Border Healthcare Directive (2011/24/EU) a mandatory framework was established to foster cooperation on a voluntary basis, within European Reference Networks (ERNs). These networks are composed of centres and healthcare providers. The exchange of knowledge is a central issue in this c...

Descripción completa

Detalles Bibliográficos
Autor principal:	Héon-Klin, Véronique
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2017
Materias:	Position Statement
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5547471/ https://www.ncbi.nlm.nih.gov/pubmed/28784158 http://dx.doi.org/10.1186/s13023-017-0676-3

Ejemplares similares

The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks
por: Evangelista, Teresinha, et al.
Publicado: (2016)

Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER
por: Bernts, Lucas H. P., et al.
Publicado: (2019)

European Reference Network For Rare Vascular Diseases (VASCERN) Outcome Measures For Hereditary Haemorrhagic Telangiectasia (HHT)
por: Shovlin, Claire L., et al.
Publicado: (2018)

eHealth for patients with rare diseases: the eHealth Working Group of the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN)
por: Paglialonga, Alessia, et al.
Publicado: (2021)

European reference network for rare vascular diseases (VASCERN) consensus statement for the screening and management of patients with pathogenic ACTA2 variants
por: van de Laar, Ingrid M. B. H., et al.
Publicado: (2019)

European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and children with hereditary haemorrhagic telangiectasia (HHT)
por: Eker, Omer F., et al.
Publicado: (2020)

Position statement on the role of healthcare professionals, patient organizations and industry in European Reference Networks
por: Hollak, Carla E. M., et al.
Publicado: (2016)

Together4RD position statement on collaboration between European reference networks and industry
por: Hedley, Victoria, et al.
Publicado: (2023)

European expert network on rare communicable diseases and other rare diseases linked to mobility and globalisation focused on health care provision (EURaDMoG): a feasibility study
por: Requena-Méndez, Ana, et al.
Publicado: (2020)

Diagnosis and management of individuals with Fetal Valproate Spectrum Disorder; a consensus statement from the European Reference Network for Congenital Malformations and Intellectual Disability
por: Clayton-Smith, Jill, et al.
Publicado: (2019)

Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild
por: Jara, P., et al.
Publicado: (2020)

Epidemiology of rare diseases in Brazil: protocol of the Brazilian Rare Diseases Network (RARAS-BRDN)
por: Félix, Têmis Maria, et al.
Publicado: (2022)

Recommendations from the European Working Group for Value Assessment and Funding Processes in Rare Diseases (ORPH-VAL)
por: Annemans, Lieven, et al.
Publicado: (2017)

RD-RAP: beyond rare disease patient registries, devising a comprehensive data and analytic framework
por: Bellgard, Matthew I., et al.
Publicado: (2019)

Graves’ orbitopathy as a rare disease in Europe: a European Group on Graves’ Orbitopathy (EUGOGO) position statement
por: Perros, P., et al.
Publicado: (2017)

Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centered outcome measures
por: Morel, Thomas, et al.
Publicado: (2017)

Towards the international interoperability of clinical research networks for rare diseases: recommendations from the IRDiRC Task Force
por: Nabbout, Rima, et al.
Publicado: (2023)

Compounded medication for patients with rare diseases
por: Dooms, Marc, et al.
Publicado: (2018)

Rare diseases in Tanzania: a National Call for Action to address policy and urgent needs of individuals with rare diseases
por: Kaywanga, Frida, et al.
Publicado: (2022)

From scientific discovery to treatments for rare diseases – the view from the National Center for Advancing Translational Sciences – Office of Rare Diseases Research
por: Kaufmann, Petra, et al.
Publicado: (2018)

Parkinson’s disease in Gaucher disease patients: what’s changing in the counseling and management of patients and their relatives?
por: Di Rocco, Maja, et al.
Publicado: (2020)

Rare disease education in Europe and beyond: time to act
por: Tumiene, Birute, et al.
Publicado: (2022)

Pharmacists are initiators in palliative care for patients with rare diseases
por: Dooms, M.
Publicado: (2023)

A patient advocating for transparent science in rare disease research
por: Yang, Richard Rui
Publicado: (2023)

European principles of inhibitor management in patients with haemophilia
por: Giangrande, P. L. F., et al.
Publicado: (2018)

The first European consensus on principles of management for achondroplasia
por: Cormier-Daire, Valerie, et al.
Publicado: (2021)

Increasing African genomic data generation and sharing to resolve rare and undiagnosed diseases in Africa: a call-to-action by the H3Africa rare diseases working group
por: Lumaka, Aimé, et al.
Publicado: (2022)

Pharmaceutical pricing, cost containment and new treatments for rare diseases in children
por: Stella, Peter, et al.
Publicado: (2014)

Rare diseases in Chile: challenges and recommendations in universal health coverage context
por: Encina, Gonzalo, et al.
Publicado: (2019)

Data silos are undermining drug development and failing rare disease patients
por: Denton, Nathan, et al.
Publicado: (2021)

Clinical management guidelines for Friedreich ataxia: best practice in rare diseases
por: Corben, Louise A., et al.
Publicado: (2022)

Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases
por: Douglas, Conor M. W., et al.
Publicado: (2022)

Sharing is caring: a call for a new era of rare disease research and development
por: Denton, Nathan, et al.
Publicado: (2022)

Regulatory strategies for rare diseases under current global regulatory statutes: a discussion with stakeholders
por: Mulberg, Andrew E., et al.
Publicado: (2019)

TRUST4RD: tool for reducing uncertainties in the evidence generation for specialised treatments for rare diseases
por: Annemans, Lieven, et al.
Publicado: (2020)

The need for widely available genomic testing in rare eye diseases: an ERN-EYE position statement
por: Black, Graeme C., et al.
Publicado: (2021)

European Association for the Study of Obesity Position Statement on the Global COVID-19 Pandemic
por: Frühbeck, Gema, et al.
Publicado: (2020)

European Achondroplasia Forum guiding principles for the detection and management of foramen magnum stenosis
por: Irving, Melita, et al.
Publicado: (2023)

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper
por: Mühlbӓck, Alzbeta, et al.
Publicado: (2023)

A proposed definition of rare diseases for China: from the perspective of return on investment in new orphan drugs
por: Cui, Yazhou, et al.
Publicado: (2015)

Cannot write session to /tmp/vufind_sessions/sess_ipmnkd1p1207r7meu33qpcg7v8