MEDICAL & RESEARCH
Our medical and research partners play a key role in helping us delivery essential support to XP Families
MEDICAL & RESEARCH
Our medical and research partners play a key role in helping us delivery essential support to XP Families
XPFSG extends our sincere gratitude to our community of partners for their generous support. Not only do they make financial contributions to help us carry out our mission, but also give their invaluable time and expertise. They play a vital role in helping us deliver the critical support XP families need through the U.S. and globally.
About GTR®
The Genetic Testing Registry (GTR®) provides a central location for voluntary submission of genetic test information by providers. The scope includes the test’s purpose, methodology, validity, evidence of the test’s usefulness, and laboratory contacts and credentials. The overarching goal of the GTR is to advance the public health and research into the genetic basis of health and disease
XP ARTICLES AND PUBLICATIONS
Reproductive Health in Xeroderma Pigmentosum
XP and premature menopause
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Primary Ovarian insufficeincy in XP patient
Primary Ovarian insufficiency in XP patient of premature aging
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Thyroid nodules in xeroderma pigmentosum patients: a feature of premature aging
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Efficacy of anti-programmed cell death-1XP and premature menopause
Efficacy of anti-programmed cell death-1 immunotherapy for skin carcinomas and melanoma metastases in a patient with xeroderma pigmentosum
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Blood First Edition Paper
Familial predisposition to TP53/complex karyotype MDS and leukemia in DNA repair-deficient xeroderma pigmentosum
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Journal of the Ferrata Storti Foundation
Predisposition to hematologic malignancies in patients with xeroderma pigmentosum
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EBIOMedicine Resea
Fesetin is a senotherapeutic that extends health and lifespan research Paper
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A Light in the Darkness
Article in Real Simple Magazine
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Alex’s reward for courage
A young sufferer of a rare skin disorder has won an award in recognition of the bravery shown in dealing…
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‘Children of the moon’ hide from a deadly sun
Sacramento family adapts to challenge of caring for toddler with rare skin disorder (November 29, 20…
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Debby Gets Help
Penbrook woman gets help for rare skin disorder
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Graycen – life beyond the shadows
Kim and Eric Beardslee weathered their daughter Graycen’s preschool years, but face new challenges i…
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Into the light
Local girl with rare skin disease gets the chance to be ‘normal’ by attending camp
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Living in the Shadows
Bay Area doctors join fight against a rare genetic skin disorder that afflicts an alarming number of…
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LIVING WITH A RARE DISEASE – Eurordis
The doctors’ advice was to “let them live a normal life”.
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XP in black South Africans
Study of fifteen South African patients
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XP Africa
Skin cancers, blindness and anterior tongue mass in African brothers
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XP in Zimbabwe
A retrospective case series
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Living with XP
Comprehensive photoprotection for highly photosensitive patients
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10-year-old shines despite genetic disease
Story of 10-year-old Jessica Robinson
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Riley McCoy lives with Xeroderma Pigmentosum
Profile of a 7-year old girl living with XP
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Xeroderma Pigmentosum
Social Security Online Info Page
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Photodynamic Therapy
Photodynamic Therapy in a Teenage Girl with Xeroderma Pigmentosum Type C.
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SD Doctor’s Health Mission
May Change how skin cancer is treated.
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Aimee’s Ocean Room
Video of Aimee who has been fighting Xeroderma Pigmentosum (XP) since birth.
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Guidance on Planning for Integration of Functional Needs Support Services in General Population Shelters
It provides recommendations on providing emergency sheltering services that are in compliance with disability-related federal laws. This document also describes common scenarios that shelter operators may encounter during emergencies.
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Rare genetic disorder threatens life of Scott County toddler
Graycen Beardslee is just like any other 2-year-old in the sense she loves playing with her dolls, h…
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San Diego Doctor’s Global Health Mission May Change How Skin Cancer is Treated
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Dr. Bari Cunningham – Comprehensive Dermatology
Home of Dr. Bari Cunningham Comprehensive Dermatology practice
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INTERNATIONAL HEALTH & SUPPORT LINKS
XP Grupo Luz de Esperanza (XP Light of Hope Group)
We provide support and educational resources in English and Spanish. Our mission is to increase public awareness about XP worldwide, especially in the Spanish-speaking countries where resources or information about this disease are extremely scarce. We are the first bilingual English and Spanish support organization for people living with XP. Persons with XP look to us for suggestions on everyday living.
Xeroderma pigmentosum (XP) Service
We are one of the UK’s leading providers of hospital and community-based healthcare, research and education. From our 5 main hospitals – Guy’s Hospital, St Thomas’ Hospital, Evelina London Children’s Hospital, Royal Brompton Hospital and Harefield Hospital, and in the community in Lambeth and Southwark, we provide a full range of lifelong, general and specialist care.
Action for XP
To provide a comprehensive support network for individuals and families affected by the ultra-rare disease, xeroderma pigmentosum (XP), providing equitable access to our charitable services throughout the UK. Providing both practical and emotional support to aid the improvement to the quality of life for individuals and families affected by XP, through all life stages of living with the disease.
About Xeroderma Pigmentosum UK
We are the only designated national service for xeroderma pigmentosum in the UK. We diagnose and treat adults and children from across the country, working closely with our specialists in dermatology, neurology, genetics, ophthalmology (eye) and psychology.
