Rare Diseases Centre referrals

A purpose-built unit for adults and children with rare diseases.

Useful information for GPs

  • tel: 020 7188 7188 ext: 55070

Bardet-Biedl syndrome (BBS)

The service accepts referrals from GPs.

Epidermolysis bullosa (EB)

The service accepts referrals from GPs.

Email for appointments and referral queries.

Xeroderma pigmentosum (XP)

The service accepts referrals from all medical professionals, including GPs, and are happy to give advice over the phone. Patients with a confirmed diagnosis of xeroderma pigmentosum (XP) who would like to attend the clinic should get in touch with the XP specialist nurses on either of the numbers above, or ask their doctor to refer them.

Referral should include:

  • skin cancer history, along with histology reports
  • relevant blood test results, including Vitamin D level
  • other test results if known, e.g. audiology, MRI, EMG
  • if an interpreter is needed
  • the patient's telephone number.

Email for appointments and referral queries.


Referral criteria

  • please contact specific service to discuss.
  • all services accept referrals from across the country.