Information on patient outcomes of those diagnosed with Ehlers-Danlos Syndrome (EDS) in London and Greater Manchester is not held centrally by the Department. EDS falls within specialised services managed by NHS England.<\/p>
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The UK Strategy for Rare Diseases sets out the Government\u2019s on-going commitment to ensuring that patients with rare diseases, including EDS, have access to high quality services. The Strategy is discussed regularly with health bodies including NHS England. The national specialised service for atypical or complex cases aims to reduce times to diagnosis and reduce the number of hospital appointments required to achieve a specific diagnosis.<\/p>
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Information about the average time from diagnosis to referral for specialist treatment is not available centrally. Patients suspected of having EDS may be assessed and diagnosed in a wide range of settings. These include United Kingdom regional clinical genetics clinics and various other secondary and tertiary speciality clinics.<\/p>
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