XP Support Group - UV protection not isolation.
Working in Partnership with Teddington Trust.
Xeroderma Pigmentosum (xp) Specialist Clinic
The NHS funded XP Multi-Disciplinary clinic was established in April 2010 to assist consultants in caring for their Xeroderma Pigmentosum (xp) patients. It provides Photodermatology, Dermatological Surgery, Neurology, Ophthalmology, Psychotherapy and Genetics based at St Thomas’ Hospital in London and Diagnostic laboratory Led by Professor Alan Lehmann at the University of Sussex. The Service has two Clinical Nurse Specialist who provide outreach services for adults and Children. The XP Support Group is an integral part of the service giving feedback on the patient experience of the Service and also by providing financial assistance for patients to attend the clinic. For details of assistance please email firstname.lastname@example.org
Click here to download our article that was published in the British Medical Journal. It is our story about how we deal with XP as a family.