Patients & Families
Rare diseases are only rare if you don’t live with one.
Quoin has a singular mission of developing safe and effective treatments for patients who live with a rare disease. Put simply, our goal is to provide hope where there is currently none. Patients are the center of everything we do, and we will work tirelessly to deliver on our promise of making our products available to ‘every patient, everywhere.
Twin sisters and writers who share the physical, emotional, and social impact of living with Netherton Syndrome.
Reflects on her family’s journey through misdiagnosis and uncertainty before her son was diagnosed, underscoring the challenges of living without an approved treatment.
Lived decades without a diagnosis, later learning she had Netherton Syndrome and had been part of one of the earliest documented cases.
Provides a clinical perspective on Netherton Syndrome, emphasizing its serious complications and the urgent need for effective therapies.
Shares her experience living with Netherton Syndrome and how years of misdiagnosis led her to become a patient advocate for greater awareness and treatment progress.
Did you know?
1 in every 100,000 to 200,000 people live with Netherton Syndrome (NS).
Netherton Syndrome patients don’t know what it’s like to have normally functioning skin. Instead, they suffer from excess skin shedding, red, scaly skin that can lead to painful itching, severe infections that can potentially lead to hospitalization, asthma, allergies, and possibly skin cancer. NS patients are susceptible to transepithelial water loss, or TEWL, and will always be at risk of dehydration. Because of this severe dehydration, infants can often suffer from a failure to thrive. In fact, 10-20% of NS babies will not survive.
Netherton Syndrome patients are aware of their skin disease every moment of every day.
Resources
FIRST Skin Foundation for Ichthyosis and related skin types
Supports patients and families affected by Ichthyosis.
Phone: (215) 997-9400
Toll free: (800) 545-3286
Website: www.firstskinfoundation.org
NORD National Organization for Rare Disorders
NORD is leading the fight to improve the lives of patients with rare diseases.
Phone: (202) 588-5700
Website: www.rarediseases.org
Genetic and Rare Diseases (GARD) Information Center
GARD is a program of the National Institutes of Health (NIH) that provides free access to reliable, easy to understand information about genetic and rare diseases.
Phone: (301) 251-4925
Toll free: (888) 205-2311
Website: www.rarediseases.info.nih.gov/GARD
Ichthyosis Support Group
Committed to the ongoing provision of an information network and support structure for individuals and families affected by ichthyosis.
Phone: +44 (0) 800 368 9621
Email: [email protected]
Website: www.ichthyosis.org.uk
Rare diseases are only rare if you don’t live with one.®
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Latest News:
Quoin Pharmaceuticals Announces Submission to Japanese MHLW for Orphan Drug Designation for QRX003 in Netherton Syndrome
Confirmation Received from MHLW That QRX003 Qualifies for Both Orphan Drug Designation and Fast Track Regulatory Review Status Quoin Initiating the Establishment of a Japanese Subsidiary to Facilitate Self-Commercialization of QRX003 in Japan, if Approved Orphan Drug...
Quoin Pharmaceuticals Files Breakthrough Medicine Designation Application in Saudi Arabia for QRX003 in Netherton Syndrome
If granted, QRX003 could be approved for sale and reimbursement in Saudi Arabia as a treatment for Netherton Syndrome in 2H 2026 QRX003 could become the first ever approved treatment for Netherton Syndrome ASHBURN, Va., Jan. 20, 2026 (GLOBE NEWSWIRE) -- Quoin...