Ehlers-danlos Syndrome: Health Services

We recognise that doctors can find it challenging to diagnose Ehlers-Danlos syndrome (EDS) because of the wide range and variability of symptoms, and that the most common type, hypermobile EDS, currently has no specific genetic test.

Resources such as the Royal College of General Practitioners’ EDS Toolkit, now maintained by Ehlers-Danlos Support UK, are helping general practitioners (GPs) to better recognise, respond to, and manage EDS and hypermobility spectrum disorders (HSD) in primary care. For rarer genetically confirmed types of EDS, NHS England commissions a national diagnostic service for EDS.

A primary goal of the national diagnostic service is to educate referring doctors about the diagnosis, investigation, and management of patients with complex and atypical forms of EDS. While the service focuses on rare types and accepts referrals from secondary and tertiary care, its development of guidelines and educational initiatives also benefit GPs who are on the front line of patient care.

Through the 10-Year Health Plan, we are introducing neighbourhood health centres, and deploying multidisciplinary teams to provide holistic support to people with EDS. Patients will benefit from enhanced NHS App functionality, including My Medicines and My Health, and will be able to self-refer to specialist services where appropriate.

Additionally, the 10-Year Health Plan’s commitments on artificial intelligence will give clinicians advanced tools for faster diagnosis, predictive analytics, and personalised care planning. For people with long-term conditions like EDS, this means earlier interventions, better monitoring of complex needs, and more time for clinicians to focus on patient-centred care rather than administrative tasks. The plan also commits to 95% of people with complex needs to have a personalised care plan by 2027.

The Government will publish the 10 Year Workforce Plan in spring 2026. It will set out action to create a workforce ready to deliver the transformed service set out in the 10-Year Health Plan. By setting out how we will train and provide the staff, technology, and infrastructure the NHS needs, the 10 Year Workforce Plan will ensure that services are more accessible, proactive, and tailored for all patients, including those with EDS.