A unique collaborative model providing supportive and self-advocacy tools to the rare disease community

A unique collaborative model providing supportive and self-advocacy tools to the rare disease community

The National Ehlers-Danlos Syndromes (EDS) service is a highly specialised NHS commissioned service for diagnosing and supporting people with a rare, monogenic type of EDS. The service consists of a team of medical specialists and genetic counsellors. The EDS service has strong ties with national an...

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Bibliographic Details
Main Authors: Juliette M. Harris, Jacqui Fish, Jared Griffin, Gemma Hasnaoui, Clare Stacey, Neeti Ghali, Fleur S. van Dijk
Format: Article
Language:English
Published: Elsevier 2024-01-01
Series:Rare
Subjects:
Ehlers Danlos syndrome (rare monogenic types)
Specialised services
Patient self-advocacy
Rare genetic disease
Online Access:http://www.sciencedirect.com/science/article/pii/S2950008724000097
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http://www.sciencedirect.com/science/article/pii/S2950008724000097

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