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Quoin Pharmaceuticals’ Latest NETHERTON NOW Video Details the Life of a Family Living with Netherton Syndrome

QNRX
  • Quoin Pharmaceuticals released a new episode of its NETHERTON NOW video series featuring Kristi Kristofferson, her daughter Kodi, & pediatric dermatologist Moise Levy, MD.
  • Kodi was diagnosed with Netherton Syndrome shortly after birth following observation of red knuckles & a 10-day NICU stay.
  • The disease causes skin to regenerate 20 to 30 times faster than average, requiring high-protein nutrition & causing significant pain during daily bathing routines.
  • Kodi requires extensive supportive care including occupational, physical, & speech therapy, which has led to delayed motor development & significant parental work absence.
  • Dr. Levy explains that diagnosis involves microscopic analysis of hair samples from areas like eyebrows followed by genetic testing.
  • Kristi advocates for public & school education to address bullying, insensitive questions, & misconceptions regarding the visible symptoms of the condition.
  • Quoin's investigational product QRX003 is currently in a Phase 2/3 clinical trial & received interim results showing statistical significance on primary endpoints in August 2026.
  • The company expects to complete full recruitment for the QRX003 study by the end of 2026 & report topline data in the second quarter of 2027.
  • There are currently no FDA-approved therapies for Netherton Syndrome, which is caused by SPINK5 gene mutations leading to severe skin barrier dysfunction.
  • QRX003 holds Orphan Drug, Rare Pediatric Disease, & Fast Track designations from the FDA, along with Orphan Drug Designations in the EU & Japan.
  • NETHERTON NOW is an awareness campaign launched in February 2025 aimed at increasing visibility of the disease among the public, clinicians, & policymakers.