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Xeroderma Pigmentosum

Home » Xeroderma Pigmentosum
RARESummit21: Rare Equity
source: pixabay.com

RARESummit21: Rare Equity

  • Post author:James Moore
  • Post published:October 26, 2021
  • Post category:Alstrom syndrome/Focal segmental glomerulosclerosis/Rare Disease/Xeroderma Pigmentosum

On October 7th, 2021, Patient Worthy took part in RARESummit21, a virtual event organized by the Cambridge Rare Disease Network (CRDN). "...a flagship CRDN event gathering over 300 great minds…

Continue Reading RARESummit21: Rare Equity
Rare Classroom: Xeroderma Pigmentosum
source: shutterstock

Rare Classroom: Xeroderma Pigmentosum

  • Post author:James Moore
  • Post published:September 15, 2021
  • Post category:Xeroderma Pigmentosum/Xeroderma pigmentosum- variant type

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Continue Reading Rare Classroom: Xeroderma Pigmentosum
Highlights from RAREfest: Cambridge’s Rare Disease Festival
TheDigitalArtist / Pixabay

Highlights from RAREfest: Cambridge’s Rare Disease Festival

  • Post author:Anna Hewitt
  • Post published:December 7, 2018
  • Post category:Neurofibromatosis/Neurofibromatosis Type 1/Xeroderma Pigmentosum

This weekend Patient Worthy attended RAREfest, an event being held in the UK by the Cambridge Rare Disease Network to raise awareness and promote discussion around rare disease issues. The…

Continue Reading Highlights from RAREfest: Cambridge’s Rare Disease Festival
The Prosthetic Mask Protects Xeroderma Pigmentosum Patient in the Sun
josealbafotos / Pixabay

The Prosthetic Mask Protects Xeroderma Pigmentosum Patient in the Sun

  • Post author:James Moore
  • Post published:August 2, 2018
  • Post category:Rare Disease/Xeroderma Pigmentosum

According to a story from The Sun, Alex was just two months old when he first experienced symptoms of xeroderma pigmentosum. His parents took him out to the park and…

Continue Reading The Prosthetic Mask Protects Xeroderma Pigmentosum Patient in the Sun
The Truth About Xeroderma Pigmentosum, The Rare Disease Featured in “Midnight Sun”
Source: Pixabay

The Truth About Xeroderma Pigmentosum, The Rare Disease Featured in “Midnight Sun”

  • Post author:James Moore
  • Post published:March 20, 2018
  • Post category:Xeroderma Pigmentosum

According to a story from Teen Vogue, Midnight Sun, a new film starring Bella Thorne, is slated for release on March 22nd, 2018, is a romantic drama whose central character,…

Continue Reading The Truth About Xeroderma Pigmentosum, The Rare Disease Featured in “Midnight Sun”
Community Stays up Late with Rare Disease ‘Moon Child’
Source: Pixabay

Community Stays up Late with Rare Disease ‘Moon Child’

  • Post author:Andres Rovira
  • Post published:November 14, 2017
  • Post category:Xeroderma Pigmentosum

Residents of a small Kansas town united together to post fliers and posters, all to raise awareness about a boy with rare disease. Eleven-year-old Peyton suffers from Xeroderma Pigmentosum (XP).…

Continue Reading Community Stays up Late with Rare Disease ‘Moon Child’

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