[European Reference Network for Rare Hepatological Diseases (ERN RARE-LIVER)].
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DOI: 10.1007/s00108-021-00986-2
Abstract: Patients with rare diseases often receive insufficient medical care. The European Reference Networks (ERNs) were initiated by the European Union to improve healthcare for patients with rare and complex diseases within Europe. The Reference Network… read more here.
Keywords: reference network; ern rare; rare liver; european reference ... See more keywords
A unique e-health and telemedicine implementation: European Reference Networks for rare diseases
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DOI: 10.1007/s10389-019-01052-w
Abstract: Aim According to the European Union (EU), a disease is considered rare when it affects no more than one person in 2000. Rare diseases (RDs) are serious, chronic, and often life-threatening conditions. There are major… read more here.
Keywords: health telemedicine; rare diseases; european reference; reference networks ... See more keywords
The VASCERN European Reference Network: An overview.
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DOI: 10.1016/j.ejmg.2022.104420
Abstract: Established since 2017 and co-funded by the European commission, VASCERN is the European Reference Network aiming at improving and homogenizing care of patients with rare multisystemic vascular diseases throughout Europe. It gathers 31 expert teams… read more here.
Keywords: european reference; vascern european; reference network; network ... See more keywords
Practical management of epidermolysis bullosa: consensus clinical position statement from the European Reference Network for Rare Skin Diseases
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DOI: 10.1111/jdv.17629
Abstract: Inherited epidermolysis bullosa (EB) comprises rare disorders that manifest with fragility and blistering of the skin and mucous membranes, with variable clinical severity. Management of EB is challenging due to disease rarity and complexity, the… read more here.
Keywords: reference network; skin; management; reference ... See more keywords
Research activity and capability in the European reference network MetabERN
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DOI: 10.1186/s13023-019-1091-8
Abstract: BackgroundMetabERN is one of the 24 European Reference Networks created according to the European Union directive 2011/24/EU on patient’s rights in cross border healthcare. MetabERN associates 69 centres in 18 countries, which provide care for… read more here.
Keywords: research; network; capability; european reference ... See more keywords
A critical evaluation of the EU-virtual consultation platform (CPMS) within the European Reference Network on Rare Endocrine Conditions
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DOI: 10.1530/ec-22-0281
Abstract: In 2017, the European Commission installed 24 European Reference Networks (ERNs) for different categories of rare and complex conditions to facilitate cross-border health care via virtual case consultations in a secure Clinical Patient Management System… read more here.
Keywords: european reference; system; evaluation; network ... See more keywords