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Ehlers-Danlos Syndrome and Hypermobility: Health Services

Asked by Sarah HallLabour (Co-op)Department of Health and Social CareTabled Answered 19 March 2026UIN 120146

The question

To ask the Secretary of State for Health and Social Care, whether his Department will commission the National Institute for Health and Care Excellence to develop clinical guidelines for the diagnosis and management of Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Answered by Dr Zubir Ahmed

There are no current plans to commission the National Institute for Health and Care Excellence (NICE) to develop clinical guidelines for the diagnosis and management of Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Topics for new or updated guidance are considered through the NICE prioritisation process, and under this process, decisions as to whether NICE will create new, or update existing, guidance are overseen by a prioritisation board, chaired by NICE’s Chief Medical Officer in line with its published prioritisation framework. Anyone is able to suggest a topic through the NICE website, at the following link:

https://www.nice.org.uk/forms/topic-suggestion

NICE guidelines do not cover all conditions, and clinicians are expected to follow relevant professional guidance and the evidence available to them when making their decisions.

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