Rare Diseases

Raquel Castro (), Juliette Senecat, Myriam Chalendar, Ildikó Vajda, Silvia Breukelen, Maria Montefusco, Stephanie Jøker Nielsen and Dorica Dan
Additional contact information
Raquel Castro: European Organisation for Rare Diseases
Juliette Senecat: European Organisation for Rare Diseases
Myriam Chalendar: Rare Disease Network—Filière de Santé Maladies Rares TETECOU, Hôpital Necker—Enfants Malades
Ildikó Vajda: Dutch Genetic Alliance VSOP—Vereniging Samenwerkende Ouder-en Patiëntenorganisaties
Silvia Breukelen: Dutch Genetic Alliance VSOP—Vereniging Samenwerkende Ouder-en Patiëntenorganisaties
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 25 in Handbook Integrated Care, 2017, pp 413-427 from Springer

Abstract: Abstract The following chapter focuses on presenting rare diseases (RDs) and the needs of people affected by these, as well as providing context on the provision of integrated care to this client group in Europe. A disease is defined as rare when it affects less than 1 in 2000 people in Europe. RD are often serious, chronic, progressive, degenerative and associated with comorbidities. As a result, they frequently cause severe impairments and substantially affect life expectancy. The unmet needs of people with a RD and their families affect their dignity, autonomy and other fundamental human rights expressed in the Universal Declaration of Human Rights and in the United Nations Convention on the Rights of Persons with Disabilities. People living with a RD face significant challenges accessing school, employment, leisure, transport, adapted housing and bank credit, to name a few. Patients and families are therefore psychologically, socially, economically and culturally vulnerable. Care for people living with a RD needs to be holistic, multidisciplinary and specifically tailored to patients’ unique needs. This implies the provision of a set of health, social and support services. Therefore, the provision of integrated care is essential for RDs: to ensure the transfer of the scarce expertise and information available, to support the coordination and communication between care providers, to optimise resources, to integrate RD specificities into mainstream services, to improve care and care pathways, and to reduce the burden for patients and families. Various methods can be used to promote integrated care for RDs including: Centres of Expertise and one-stopshop services for RDs; case managers; care pathways and standards of care; individual care plans; networking and training programmes for service providers; the integration of RDs into national functionality assessment systems; and eHealth.

Date: 2017
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DOI: 10.1007/978-3-319-56103-5_25

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