Overview

We're the only dedicated national service in the UK for xeroderma pigmentosum (XP). 

XP is a rare, genetic condition. The body is unable to repair damage to the DNA in the skin, caused by ultraviolent radiation (UVR) present during daylight. 

People with XP are more likely to:

• sunburn easily
• develop abnormal freckles
• develop eye problems due to damage from UVR
• develop skin cancers

XP can also cause problems with the nerves or brain.

You'll be cared for by a range of health professionals with expertise in different areas. They'll work together to give you the best care. 

At our 'one stop' clinics, you'll see a variety of specialists. We can carry out biopsies and tests on the same day.

We also work with your local services to provide support between visits.

Our specialist nurses can visit you at your home, school or workplace to provide support and advice.

We also provide a service to help people move from our children's XP service to our adult service.

Our team includes:

• consultants
• clinical nurse specialists
• an XP imaging practitioner
• administration staff

Health information

Read our detailed information about XP, including genetic testing, how to manage XP and our information for teachers.

• Action for XP offers advice and practical help to anyone affected by XP
• Healthunlocked is a social network where people can connect with others going through the same thing as them

Our consultants

Hiva Fassihi, consultant dermatologist

Alan Lehmann, honorary consultant scientist

Shehla Mohammed, consultant clinical geneticist

Paola Giunti, consultant neurologist

Susie Morley, consultant ophthalmologist and oculoplastic surgeon

Emma Craythorne, consultant dermatological surgeon

Sophie Momen, consultant dermatologist

Isabel Garrood, clinical neuropsychologist

Adesoji Abiona, children's consultant

Research and clinical trials

Research is vital to improving the care that you receive when you're unwell. You can help improve healthcare by taking part in research studies at our Trust. During your appointment, ask your healthcare professional about research. They'll be happy to tell you about research studies you could be eligible to join. 

You can also email [email protected] for more information.