XP = xeroderma pigmentosum:
The Facts (as of 2022)
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Effects of XP
Patients with XP lack fully functioning DNA repair mechanisms which means…
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Information about the National XP Clinic
at St Thomas Hospital, London
The NHS funded Xeroderma Pigmentosum (XP) Multi-Disciplinary clinic was established in April 2010 to
provide expert clinical care for patients thought to have or diagnosed with XP.
It provides Photodermatology, Dermatological Surgery, Neurology, Ophthalmology, Neuro- Psycology and Genetics advice about living with XP. It is based at the Rare Diseases Centre at St Thomas’ Hospital in London and diagnostic testing is conducted at the Genome Damage and Stability Centre at the University of Sussex and the Molecular Genetics Laboratory at Guy’s Hospital. The service has three clinical nurse specialists who provide outreach services for adults and children, visiting patients at their home, school and workplace.
Action for XP is an integral part of the service giving feedback on the patient experience of the service as well as providing on-the-ground peer support and financial assistance for patients to attend the clinic.
For further information please visit https://www.guysandstthomas.nhs.uk/our-services/xeroderma-pigmentosum-xp which includes links to information about how to protect yourself from ultraviolet radiation (UV), using a UV meter, information about the need for vitamin D and information to give to schools.
provide expert clinical care for patients thought to have or diagnosed with XP.
It provides Photodermatology, Dermatological Surgery, Neurology, Ophthalmology, Neuro- Psycology and Genetics advice about living with XP. It is based at the Rare Diseases Centre at St Thomas’ Hospital in London and diagnostic testing is conducted at the Genome Damage and Stability Centre at the University of Sussex and the Molecular Genetics Laboratory at Guy’s Hospital. The service has three clinical nurse specialists who provide outreach services for adults and children, visiting patients at their home, school and workplace.
Action for XP is an integral part of the service giving feedback on the patient experience of the service as well as providing on-the-ground peer support and financial assistance for patients to attend the clinic.
For further information please visit https://www.guysandstthomas.nhs.uk/our-services/xeroderma-pigmentosum-xp which includes links to information about how to protect yourself from ultraviolet radiation (UV), using a UV meter, information about the need for vitamin D and information to give to schools.