Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people diagnosed with Ehlers-Danlos syndrome.

The Government is committed to improving the lives of those living with rare diseases, such as Ehlers-Danlos Syndrome (EDS). The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community. These include better coordination of care and improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework, and will publish an annual England action plan in 2025 which will report on progress.

NHS England commissions some specialist services for patients with EDS, currently delivered by two centres in England, the London North West University Healthcare Trust and the Sheffield Children’s NHS Foundation Trust. The Complex EDS service provides diagnosis and advice to referrers on the treatment and management of complex cases.