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Rare Diseases Centre

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

The Rare Diseases Centre at St Thomas’ Hospital is a purpose-built unit, providing care for adults and children with rare, life-long genetic and skin conditions. The centre brings together several specialist services in one place.

The rare conditions include: 

  • bardet-biedl syndrome (BBS), a disorder that can cause blindness and kidney disease and affects other parts of the body.
  • epidermolysis bullosa (EB), which causes fragile skin prone to recurrent painful blisters and sores.
  • genetics, offer services to diagnose and assess the risk of patients and families inheriting a genetic condition.
  • xeroderma pigmentosum (XP), a genetic disorder affecting patients’ ability to repair the damage caused by ultraviolet (UV) light, significantly increasing risk of skin cancer and eye disease.

 Features of the centre include:

  • UV-free areas for people with XP.
  • large consultation rooms to see entire families affected by the same genetic condition at once.
  • state-of-the-art video conference equipment, enabling clinicians to work closely with patients’ local health services and to discuss cases on an international level.
  • large, welcoming reception area, kitchen facilities and a sensory gardens for patients and their families.


Tel: 020 7188 7188 ext 55070


The Countess of Wessex and patient Zion Semere

The Countess of Wessex visited St Thomas’ Hospital on Tuesday 25 September to officially open the hospital’s new Rare Diseases Centre.