Ehlers-Danlos Syndromes (EDS) national diagnostic service

The Ehlers-Danlos Syndromes (EDS) national diagnostic service, also known as the Complex EDS service, is a specialist service for you and your family if you have or are suspected to have a rare type of EDS. We accept referrals from NHS specialists in secondary or tertiary healthcare.

Telephone number: 020 8869 3166
Location: Ehlers-Danlos Syndromes national diagnostic service, Northwick Park and St. Mark's Hospitals, Level 8V, Watford Road, Harrow HA1 3UJ

The Ehlers Danlos Syndromes (EDS) national diagnostic service, also known as the Complex EDS service, is a specialist service for adults and children who have or are suspected to have a rare monogenic type of EDS. We work closely with national and international EDS patient charities and experts to share knowledge and contribute to research. Our service covers England and Scotland. Referrals outside these areas will need local level approval, and we ask that you contact us before making the referral.

We see people with a suspected or confirmed diagnosis of rare type of EDS. All EDS types have some features in common which can include joint hypermobility, varying degrees of stretchy skin and tissue fragility. Symptoms can range from mild to severe. There are several rare types of EDS including:

• classical
• vascular
• kyphoscoliotic
• periodontal.

We focus on diagnosing rare types of EDS. 

We do not see people with a suspected or confirmed diagnosis of hypermobile EDS or hypermobility spectrum disorder (HSD). We do not offer management for hypermobility. Instead, people with these conditions may find it more useful to see other specialists who can help you with advice about management, such as a physiotherapist or a paediatrician. 

If your main complaints are pain and/or fatigue, you may benefit from a outpatient pain management or chronic fatigue service.

Once we accept your referral, we will:

• send you an email/letter asking for more information about your medical and family history
• arrange a telephone call with our genetic counsellor to gather information before your clinic appointment and discuss your questions or concerns.

If you do not hear from us and it has been more than six weeks since your referral to us, please contact us to check that we have received your referral.

At your appointment, we:

• will review and discuss your medical history and family history with you
• arrange for you to have a physical examination
• and we may offer you a test, such as a genetic blood test.

After you've had your assessment:

• if you have a rare type of EDS, we will offer support to help you manage your condition, this may include seeing other specialists 
• if you do not have a rare type of EDS, you will be discharged from our care and we may recommend more local specialist care to help you manage your symptoms

If you are living with EDS, you may find the following organisations helpful:

• Annabelle's Challenge (vascular EDS)
• Ehlers-Danlos syndrome UK Charity and Support Group (EDS-UK)
• Hypermobility Syndromes Association (HMSA)
• The Ehlers-Danlos Society.

We accept referrals from NHS specialists in secondary or tertiary care for both adults and children if a rare type of EDS is suspected.

We will only accept referrals from GPs or private consultants if the patient has a confirmed molecular diagnosis of a rare EDS type or is a family member of a person with a molecularly confirmed rare type of EDS. GPs can refer patients with a suspicion of an inherited connective tissue disorder or a rare type of EDS to their local genetic service.

How to make a referral?

Please include the following information in the referral which can be sent to us at the above address or by email - LNWH-tr.EDSLondonReferrals@nhs.net

• patient’s contact details
• a copy of referring clinician’s most recent clinic letter
• a copy of the family pedigree if available
• a genetic report if available
• extra information if you consider the referral to be urgent, for example in the case of pregnancy

Should the referral not meet our criteria we will recommend other NHS services who can help to manage the condition.