Rare Diseases

Raquel Castro (), Myriam Chalendar, Ildikó Vajda, Silvia Breukelen, Sandra Courbier, Victoria Hedley, Maria Montefusco, Stephanie Jøker Nielsen and Dorica Dan
Additional contact information
Raquel Castro: EURORDIS-Rare Diseases Europe
Myriam Chalendar: Hôpital Necker—Enfants Malades
Ildikó Vajda: Dutch Patient Alliance—Patiëntenfederatie Nederland
Silvia Breukelen: Dutch Genetic Alliance VSOP—Vereniging Samenwerkende Ouder-en Patie¨ntenorganisaties
Sandra Courbier: EURORDIS-Rare Diseases Europe
Victoria Hedley: Newcastle University
Maria Montefusco: Council of Nordic Cooperation On Disability, Nordic Centre for Welfare and Social Issues
Stephanie Jøker Nielsen: Rare Diseases Denmark—Sjældne Diagnoser
Dorica Dan: Romanian National Alliance for Rare Diseases RONARD—Alianta Nationala Pentru Boli Rare Romania

Chapter Chapter 44 in Handbook Integrated Care, 2021, pp 763-782 from Springer

Abstract: Abstract Rare diseases (RDs) are serious, often chronic, progressive, degenerative and associated with comorbidities, substantially affecting quality of life. Integrated care is essential to ensure the transfer of scarce expertise on RDs, the needed coordination between care providers, and to ultimately improve care pathways, guaranteeing the continuous and holistic care delivery that people with RDs need. Studies and pilots conducted so far have shown that integrated and holistic care provision leads to important quality of life improvements for those living with RDs and their families, while being cost-effective and improving the coordination among care providers. Despite this growing evidence, much remains to be done to achieve integrated care for people living with RDs in Europe. In 2016, the Commission Expert Group on Rare Diseases recommended that European Member States should implement measures to facilitate multidisciplinary, holistic, continuous and person-centred care to people living with RDs. In 2019, EURORDIS-Rare Diseases Europe, published an important set of recommendations to support the implementation of integrated care for RDs in Europe. These refer measures to create a supporting environment at national level, specific mechanisms to ensure integrated care and concrete actions to support the dissemination of essential knowledge and good practices. Various methods can and should be used simultaneously to promote integrated care for RDs, including: Centres of Expertise and resource centres for RDs; case managers; care pathways and standards of care; individual care plans; networking and training programmes for service providers; eHealth; European Reference Networks; and the integration of RDs into national functionality/disability assessment systems.

Date: 2021
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DOI: 10.1007/978-3-030-69262-9_44

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