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

We accept referrals from NHS specialists in secondary or tertiary care for both adults and children.

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. Instead GPs can refer patients with a suspicion of an inherited connective tissue disorder or 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.EDSLondonOffice@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 your referral to be urgent e.g. in the case of pregnancy

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

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