Written Question on Ehlers-Danlos Syndrome

Written Questions are submitted by MPs or Lords to receive information from a Department.

See more on: "Ehlers-Danlos Syndrome"
Date Title Questioner
1 May 2019, 4:06 p.m. Ehlers-Danlos Syndrome Holly Lynch


To ask the Secretary of State for Health and Social Care, what steps he is taking to improve the diagnosis time for patients with Ehlers–Danlos syndrome.

Answer (Caroline Dinenage)

Ehlers-Danlos Syndromes (EDS) are a group of rare inherited connected tissue disorders, affecting around one in 20,000 people. EDS can go undiagnosed, or misdiagnosed, for many years.

Building upon the success of the 100,000 Genomes Project, in which EDS was included as part of the rare disease arm, the NHS Genomics Medicine Service (GMS) was launched in October 2018. The GMS brings together existing clinical genetics services and new genomic laboratory infrastructure to provide consistent and equitable access to genomic medicine.

The National Genomic Test Directory which underpins the GMS was updated in March 2019 and specifies which genomic tests are commissioned by the National Health Service in England, the technology by which they are available, and the patients who will be eligible to access a test. EDS with a likely monogenic cause is included in the National Test Directory.

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