Xeroderma Pigmentosum (XP)

Welcome to the XP Road Map

Affected Population:
Genetics

Clinuvel Pharmaceuticals

XP Treatment Updates

  • When light is lethal: Moroccans struggle with skin disorder 11 Aug 2019 06:58 The Republic CASABLANCA, Morocco — Determined for her 7-year-old son to attend school despite a life-threatening sensitivity to sunlight, Nadia El Rami stuck a deal with the school’s director: Mustapha would be allowed in the classroom, but only if he studies inside a …

 

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Contact these non-profit organizations to learn more about XP:

Camp Sundown

Teddington’s Trust

XP Support Group

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XP Treatment Case Studies

XP Patient and Caregiver Support Groups Across the Web

Instagram Posts

Related Terms:

Eye of the Tiger

MRI

Iron accumulation

NBIA Disorders

Pantothenate Kinase-Associated Neurodegeneration (PKAN), a form of Neurodegeneration. Neurodegeneration with Brain Iron Accumulation (NBIA) develops when iron accumulates in the brain resulting in nerve damage and other debilitating symptoms. PKAN is the most common form of NBIA and 30 to 50% of MBIA patients are diagnosed with PKAN.

Also referred to as:

  • Hallervorden-Spatz Syndrome
  • HARP
  • HSS
  • NBIA1
  • neurodegeneration with brain iron accumulation type 1
  • Pigmentary Degeneration of Globus Pallidus, Substantia Nigra, Red Nucleus

 

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