Coordination of Care

Care coordinators help manage and organise a person’s care. For many people with rare conditions, they do not have access to a named care coordinator and therefore have no choice but to become a ‘project manager’ for their own healthcare or for the person they care for. On this page you will find the work we do relating to improving access to care coordination.

Rare Disease Day 2017

Coordination of Care

All Party Parliamentary Group hearing on access to medicines in England

Coordination of Care

The Rare Reality (2016)

Coordination of Care

Patient Experiences of Transition Between Care Providers (2014)

Coordination of Care

Experiences of Rare Diseases: Patients and Families in Scotland (2012)

Coordination of Care

Experiences of Rare Diseases Patients and Families in Wales (2012)

Coordination of Care

Improving Lives, Optimising Resources (2011)

Coordination of Care

Coordination of Care

Rare Disease Day 2017

All Party Parliamentary Group hearing on access to medicines in England

The Rare Reality (2016)

Patient Experiences of Transition Between Care Providers (2014)

Experiences of Rare Diseases: Patients and Families in Scotland (2012)

Experiences of Rare Diseases Patients and Families in Wales (2012)

Improving Lives, Optimising Resources (2011)

Experiences of Rare Diseases: An Insight from Patients and Families (2010)

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Genetic Alliance UK provides the secretariat for the following parliamentary groups on Rare, Genetic and Undiagnosed Conditions: