EDS UK funds the world’s first EDS specialist nurse

We are proud to announce that, in partnership with the NHS, we are jointly funding the world’s first EDS specialist nurse. Keep reading to find out more about our exciting news.


How is the nurse being funded?

The new nursing post is being jointly funded for two years by the NHS and The Ehlers-Danlos Support UK. We see EDS specialist nurses as an integral part of improving patient care moving forward and we are committed to evaluating the success of this appointment, for future funding and positioning of other nurses in the UK.


Where will the nurse be based?

The nurse will work at the hypermobility service at University College Hospital London (UCLH), which is led by consultant rheumatologist Dr Hanadi KazKaz who is also Chair of EDS UK’s Medical Advisory Panel.

The UCLH rheumatology department is a UK centre of excellence for clinical care, training and research. The service was established by Prof Rodney Grahame in 1997. It is regarded as a UK  national centre and the hypermobility service sees around 600-700 new cases per year from around the UK including the rarer forms of EDS and other heritable connective tissue disorders.

The service offers diagnosis and management for patients with all suspected or confirmed hypermobility-related disorders.  They aim to give patients a precise clinical diagnosis together with advice on lifestyle and future management to be continued in their own community.


What role will the nurse play in the care of patients?

The nurse will coordinate the multidisciplinary care of patients who attend the hypermobility service at UCLH both while they are in the service and when they return to their local community. They will also be a specialist point of contact for a patient’s local healthcare team. People with EDS (especially hypermobile EDS) often have lots of different hospital appointments for a wide range of symptoms, sometimes without finding out what is wrong with them. This approach should improve the local management of people’s EDS and reduce the number of hospital appointments needed.


How do I see the nurse?

The nurse will be available for all patients who are referred to the UCLH hypermobility service. Patients located outside the hospital’s catchment area can use the service but must be referred by their local rheumatologist. Patients within the catchment area of the hospital can be referred by their GP.


When will the nurse be appointed?

The position is currently being recruited for and we hope it will be filled within the next few months.


"Being able to fund the world's first EDS nurse is a milestone for the charity and a reflection of how far we have come. We are very grateful to the EDS community who have donated and fundraised over the years. It is only down to them that this is possible. We see this appointment as a stepping stone to creating a UK-wide, post-diagnostic care pathway for EDS patients, that is simplified for the patient and reduces costs for the NHS. Whilst we appreciate this is a single nurse in one hospital, we hope to learn from this appointment and fund similar services in other parts of the UK in the future"

Kay Julier

CEO, The Ehlers-Danlos Support UK

Can I donate to this project?

The nurse has already been fully funded through EDS UK and the NHS. All EDS UK funds have come from generous donors just like you. We see EDS specialist nurses as the future for patient care and we are committed to trying to provide similar services elsewhere in the UK. A donation today of any amount can help us achieve this goal.

Donate now