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COVID-19 raises fresh challenges for children with epidermolysis bullosa and their family – ABC News

Sibilngs Azraqee and Siddiqah both have a genetic condition that some have called “the worst disease you’ve never heard of”. And the pandemic is adding to their…

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Life can be incredibly difficult when even eating lunch, or rolling over in the middle of the night, can cause you agony.
That’s the reality for siblings Nur Siddiqah and Muhammad Azraqee Azny.
They have a rare genetic disorder called epidermolysis bullosa (EB), which some call “the worst disease you’ve never heard of”.
Key points:

  • Around 500,000 people live with epidermolysis bullosa, a genetic skin condition with no cure
  • Scientists are exploring different treatment options: protein therapy, cell…

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