Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that people with Ehlers-Danlos Syndrome receive adequate medical support.

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, which include better coordination of care and improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework and published the fourth annual England action plan on 28 February 2025, which reports on progress.

NHS England commissions some specialist services for patients with EDS, which are currently delivered by two centres in England, namely 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.