Quoin Pharmaceuticals’ Latest NETHERTON NOW Video Details the Life of a Family Living with Netherton Syndrome
Kristi and Kodi Share Their Experience Living with the Rare Genetic Skin Disease, Alongside Insights from Pediatric Dermatologist Moise Levy, MD
Kodi, who lives with Netherton Syndrome, in the latest NETHERTON NOW episode.
ASHBURN, Va., Nov. 06, 2026 (GLOBE NEWSWIRE) -- Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) (“Quoin” or the “Company”), a late clinical-stage specialty pharmaceutical company focused on rare and orphan diseases, today announced the release of the latest episode in its NETHERTON NOW video series. The episode features Kristi Kristofferson and her daughter, Kodi, who has Netherton Syndrome, along with Moise Levy, MD, the pediatric dermatologist who has cared for Kodi since she was a newborn.
“Once she came out, they started cleaning her up and noticed her knuckles were really red. They were like, ‘We need to take her over to NICU to get this checked out.’ And she was in NICU for 10 days,” Kristi says in the video.
Dr. Levy describes how Netherton Syndrome is identified in a newborn. “When you think of Netherton’s and looking at a newborn, for instance, who is diffusely red and scaling, the hairs have a distinctive difference under the microscope and the eyebrows are a perfect place to grab a sample,” he explains. “And then genetic testing is done and that is the icing on the cake, so to speak.”
Kristi describes how the disease affected Kodi’s earliest development and the range of care the family has relied on. “Learning how to crawl was a little delayed because her body just hurt.”
“We did occupational therapy, physical therapy, speech therapy,” Kristi says. “We’ve had a myofascial therapist.” She adds, “It was a lot of appointments, lots of time missed from work.”
Kristi also describes the family’s morning routine before school.
“As we get older and we’re in school, we have a schedule, so we have to wake up early and peel off our face,” Kristi says. “We soak that skin with wet towels in the bathtub. We take our time. When we get in the water, it hurts or it burns. So we face that challenge each day.” She adds, “Lots of tears shed by both of us in the mornings doing those baths and getting ready.”
Kristi Kristofferson with her daughter, Kodi, who has Netherton Syndrome.
Kristi explains how critical nutrition is for Kodi. “She’s always hungry. Her skin is regenerating 20 to 30 times faster than another kid who’s eight years old. Her skin’s working so hard, so we try to keep her pumped full of protein and making sure she’s getting all the good nutrients that she needs.”
Kristi also speaks about the reactions Kodi faces in public, and the role education plays in protecting her.
“Nobody sees anyone with ichthyosis. So if someone were to come up and say, ‘Oh my God, it looks like your child’s having an allergic reaction.’ Nope, she’s fine. She just has a rare skin condition,” she says. “Everyone needs to educate and especially at school, if you’re going to be with my child for two semesters, learn about it.”
“I’m really just in awe of how strong she is,” Kristi adds. “She’s a role model to us and to our family.”
“Kristi’s and Kodi’s story continues to highlight not only the extent of the medical care and the endless doctor’s appointments that are required for Netherton Syndrome patients, but also the everyday reality of the disease, including the painful bathtub routine every morning and evening, the endless itching, the bullying in the classroom and the relentless insensitivity of thoughtless questions from strangers,” said Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals. “Kristi’s call for teachers and the public to learn about this disease is what NETHERTON NOW was created to answer. Our aim is to raise awareness about the disease beyond the Netherton community, within the general public, treating clinicians, and policy and law makers. These patients and families deserve a voice.”
Quoin’s investigational product, QRX003, is currently being evaluated in a Phase 2/3 clinical trial for the treatment of Netherton Syndrome.
“Netherton Syndrome affects far more than the skin. Families carry the cost for years, in occupational, physical and speech therapy, specialist appointments, endless nights of interrupted sleep and time away from work,” said Dr. Michael Myers, Co-Founder and Chief Executive Officer of Quoin Pharmaceuticals. “There is still no approved treatment. In August, interim results from our ongoing Phase 2/3 study demonstrated that QRX003 achieved statistical significance on the primary and key secondary endpoints. We expect to complete full recruitment for this study by the end of 2026 and report topline data in the second quarter of 2027, and we look forward to sharing those results with the Netherton Syndrome community.”
The full video featuring Kristi Kristofferson, Kodi and Moise Levy, MD, is available at: https://www.youtube.com/watch?v=16MPOK2Ndys
About the NETHERTON NOW Campaign
NETHERTON NOW is an awareness campaign created by Quoin Pharmaceuticals and launched in February 2025 to increase visibility of Netherton Syndrome among the general public, treating physicians, the patient community, and policy and lawmakers. The campaign shares patient and caregiver stories, clinical perspectives, and educational content from the Netherton Syndrome community. Videos and additional resources are available at https://nethertonnow.com.
About Netherton Syndrome
Netherton Syndrome is a rare, inherited skin disease caused by mutations in the SPINK5 gene, leading to severe skin barrier dysfunction, chronic inflammation, and a heightened risk of infections and allergic complications. Patients often experience widespread skin redness, scaling, persistent itching, and significant impairment in quality of life. There are currently no FDA-approved therapies for the treatment of Netherton Syndrome, and treatment options are limited to supportive care and off-label therapies.
About QRX003
QRX003 is an investigational topical serine protease inhibitor lotion in late-stage development for Netherton Syndrome and other orphan skin diseases. QRX003 has been granted Orphan Drug, Rare Pediatric Disease, and Fast Track designations by the U.S. Food and Drug Administration, and Orphan Drug Designation in the European Union and Japan for Netherton Syndrome. QRX003 lotion (4%) is currently being evaluated in Phase 2/3 whole-body clinical trials in patients with Netherton Syndrome. QRX003 is also being evaluated for the treatment of Peeling Skin Syndrome.
About Quoin Pharmaceuticals Ltd.
Quoin Pharmaceuticals Ltd. is a late clinical-stage specialty pharmaceutical company focused on developing and commercializing therapeutic products that treat rare and orphan diseases. We are committed to addressing unmet medical needs for patients, their families, communities and care teams. Quoin’s innovative pipeline is focused on two key platform products, QRX003 and QRX009 that collectively have the potential to target a broad number of rare and orphan indications, including Netherton Syndrome, Peeling Skin Syndrome, Palmoplantar Keratoderma, Pachyonychia Congenita, Gorlin Syndrome, Tuberous Sclerosis Complex, Microcystic Lymphatic Malformations, Venous Malformations, Angiofibromas and others. For more information, visit www.quoinpharma.com or LinkedIn for updates.
Forward-Looking Statements
The Company cautions that statements in this press release that are not descriptions of historical facts are forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. Forward-looking statements may be identified by the use of words referencing future events or circumstances, such as “expect,” “intend,” “hope,” “plan,” “potential,” “anticipate,” “aim,” “look forward,” “believe,” “may,” and “will,” among others. This press release contains forward-looking statements. All statements that reflect the Company’s expectations, assumptions, projections, beliefs, or opinions about the future, other than statements of historical fact, are forward-looking statements, including, without limitation, statements relating to: completing full recruitment for the ongoing Phase 2/3 study of QRX003 in Netherton Syndrome by the end of 2026; reporting topline data from that study in the second quarter of 2027 and sharing those results with the Netherton Syndrome community; the Company’s aim to raise awareness of Netherton Syndrome beyond the Netherton community, within the general public, treating clinicians, and policy and law makers; and Quoin’s products in development collectively having the potential to target a broad number of rare and orphan indications, including Netherton Syndrome, Peeling Skin Syndrome, Palmoplantar Keratoderma, Pachyonychia Congenita, Gorlin Syndrome, Tuberous Sclerosis Complex, Microcystic Lymphatic Malformations, Venous Malformations, Angiofibromas and others. Because such statements are subject to risks and uncertainties, actual results may differ materially from those expressed or implied by such forward-looking statements. These forward-looking statements are based upon the Company’s current expectations and involve assumptions that may never materialize or may prove to be incorrect. Actual results and the timing of events could differ materially from those anticipated in such forward-looking statements as a result of various risks and uncertainties including, but not limited to, the Company’s ability to pursue its regulatory strategy; the Company’s ability to obtain regulatory approvals for commercialization of product candidates or to comply with ongoing regulatory requirements; the Company’s ability to complete clinical trials on time and achieve desired results and benefits as expected; and other factors discussed in the Company’s Annual Report on Form 10-K for the year ended December 31, 2025 and in other filings the Company has made and may make with the SEC in the future. One should not place undue reliance on these forward-looking statements, which speak only as of the date on which they were made. The Company undertakes no obligation to update such statements to reflect events that occur or circumstances that exist after the date on which they were made, except as may be required by law.
For further information, contact:
Quoin Pharmaceuticals Ltd.
Michael Myers, Ph.D., CEO
mmyers@quoinpharma.com
Investor Relations
PCG Advisory
Jeff Ramson
jramson@pcgadvisory.com
(646) 863-6341
Photos accompanying this announcement are available at
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