The Ehlers Danlos Syndrome (EDS) National Diagnostic Service is funded by NHS England for patients in England and Scotland with suspected complex EDS. For patients from Wales, Northern Ireland, Republic of Ireland and the Channel Islands, please contact the coordinator for more information about these arrangements.
How to refer
Referrals are accepted from NHS Consultants in Secondary Care/Tertiary Care for patients in whom:
- Diagnostic testing does not confirm diagnosis of suspected rare type of EDS
- Diagnostic criteria of more than one type of EDS identified
- Significant additional findings aside from diagnostic criteria
- Confirmed diagnosis of a rare type of EDS and expert advice is requested
Please include the following details with referrals where appropriate:
- Patient contact details – including address and telephone number if available
- Any genetic testing details – and a copy of the report
- Any skin biopsy details – and a copy of the report
- Copy of referring clinicians most recent clinic letter
- Copy of pedigree when referral is made by a Geneticist.
Dr Fleur S van Dijk, Consultant in Clinical Genetics
Ehlers Danlos Syndrome National Diagnostic Service (London), Level 8V, Northwick Park and St Mark's Hospitals, Watford Road, Harrow HA1 3UJ
Tel. 020 8869 3166, 9.30am - 4.30pm
We are not able to accept GP referrals. Where the primary concern is diagnosis, GPs can refer the patient to their local regional genetics service. The addresses of regional genetics services can be found on the website of the British Society for Genetic Medicine. If appropriate, the geneticist could then make an onward referral to the EDS Diagnostic Service.
Where there are management issues to be addressed, relating to the hypermobility spectrum, it is often more appropriate to refer to a rheumatologist with an interest in hypermobility, or paediatrician.
We are part of a network of clinicians across the UK interested in improving outcomes for patients with EDS, and are happy to assist patients and their doctors with recommendations for ongoing management.