Does an individual plan make better services for children with rare disorders?

Dammann, Brede

doi:10.5334/ijic.2067

Int J Integr Care

2015

DOI: 10.5334/ijic.2067

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Does an individual plan make better services for children with rare disorders?

Brede Dammann

Abstract: Background: TRS National Resource Centre for Rare Disorders offers services to seven diagnostic groups of rare congenital disorders, mainly related to the skeletal-and muscular system. The centre works to increase knowledge and offer guidance and counselling on medical, psychological, social and educational issues relating to the diagnostic groups. The centre has a multidisciplinary staff and is a part of the Sunnaas Rehabilitation Hospital, located just outside Oslo, Norway.

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Bridging the Gap between Health and Social Care for Rare Diseases: Key Issues and Innovative Solutions

Castro

Senecat

Chalendar

et al. 2017

Advances in Experimental Medicine and Biology

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Bridging the gaps between health and social care for rare diseases is not only necessary but crucial to increase the life expectancy, quality of life and autonomy of people living with a rare disease, supporting them in the full realisation of their fundamental human rights.The complexity of rare diseases, their strong relation to disability and the current unmet social and daily life needs of people living with a rare disease must not be underestimated and require urgent attention from all stakeholders involved in care provision, from healthcare to social and community services.The Commission Expert Group Recommendations to Support the Incorporation of Rare Diseases into Social Services and Policies, adopted unanimously in April 2016, by the representatives of European Member States and the other rare disease stakeholders, clearly set the tone for the need to promote measures that facilitate multidisciplinary, holistic, continuous, person-centred and participative care provision to people living with rare diseases.These recommendations, sided by other recent policy developments at European and national levels, represent an important policy step into approaching rare diseases' complex challenges in regards to holistic care provision.Innovative approaches aiming at bridging the gap between health, social and community service and support providers are currently being developed and tested in different European countries: standards of care, networks of expertise, case management services, one-stop-shop services, amongst others.These ongoing pilot approaches, presented in this chapter, have the power to inspire future policies and the effective and efficient implementation of holistic care pathways for people living with a rare disease, bringing about significant changes for patients, carers, care providers, competent authorities and the society at large.Nonetheless, the challenges to fully address this issue remain numerous and other key issues will also need to be taken into account when moving forward with the implementation of measures that aim at bridging the gaps between care providers and providing holistic care to people living with a rare disease.

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Bridging the Gap between Health and Social Care for Rare Diseases: Key Issues and Innovative Solutions

Castro

Senecat

Chalendar

et al. 2017

Advances in Experimental Medicine and Biology

View full text Add to dashboard Cite

show abstract

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Does an individual plan make better services for children with rare disorders?

Cited by 1 publication

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Bridging the Gap between Health and Social Care for Rare Diseases: Key Issues and Innovative Solutions

Bridging the Gap between Health and Social Care for Rare Diseases: Key Issues and Innovative Solutions

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