Other referral pathways

Some of our services and clinics accept referrals from non-GP referrers, teaching professionals, or parents or guardians. Some services accept paper referrals for clinically urgent cases only.

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Ehlers-Danlos syndrome service referrals

Please note that we are unable to accept referrals from GPs or private consultants. We can only accept referrals from NHS consultants.

Information for consultants

Our service is funded by NHS England for people with suspected complex EDS in England and Scotland. To get more information about services for people in Wales, Northern Ireland, the Republic of Ireland and the Channel Islands, please speak to our coordinator.

We can accept referrals for patients where:

  • diagnostic testing does not confirm diagnosis of a suspected rare type of EDS     
  • diagnostic criteria of more than one type of EDS identified 
  • there are significant additional findings aside from diagnostic criteria
  • the patient has a confirmed diagnosis of a rare type of EDS and you are requesting expert advice

Where appropriate, please include the following information in your referral:

  • 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
  • a copy of the referring clinician's most recent clinic letter 
  • a copy of pedigree (when a referral is made by a geneticist).

To make a referral, please write to the Ehlers Danlos Syndrome National Diagnostic Service (London), Level 8V, Northwick Park and St Mark's Hospitals, Watford Road, Harrow HA1 3U.

You can also contact our EDS coordinator on 0208 869 3166 or by email.

Information for GPs

Unfortunately, we cannot accept referrals from GPs.

  • To help a patient get a diagnosis, please refer them to your local regional genetics service. If it's appropriate, the geneticist can then refer your patient onto the EDS Diagnostic Service.
  • To support or treat a patient with hypermobility issues, it is often more appropriate to refer them to a rheumatologist with an interest in hypermobility, or to a paediatrician if your patient is a child or young person.

We are part of a network of clinicians across the UK interested in improving outcomes for people with EDS, and are happy to assist patients and their doctors with recommendations for ongoing management.

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