Episode Highlights a Truly Remarkable Patient Story Spanning 79 Years
Video features 79-year-old Norma Coles, believed to be among the earliest individuals ever evaluated for Netherton Syndrome and is available on the company’s NETHERTON NOW website
ASHBURN, Va., April 10, 2025 (GLOBE NEWSWIRE) -- Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) (“Quoin” or the “Company”), a late clinical-stage specialty pharmaceutical company focused on the development and commercialization of therapeutic products that treat rare and orphan diseases, today announced the release of the second episode in its “Living with Netherton” video series, part of the company’s broader NETHERTON NOW awareness campaign. This installment features Norma Coles, a 79-year-old woman whose diagnosis with Netherton Syndrome came decades after she was first evaluated by the condition’s namesake, Dr. Edward Netherton.
“Norma’s story thoughtfully bridges the earliest history of Netherton Syndrome with today’s urgent need for awareness and treatment,” said Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals. “Her powerful story reflects the reality of so many others who continue to go undiagnosed and unsupported. ‘Living with Netherton’ highlights individuals who have gone unheard and unrecognized for far too long, bringing to light the urgent need for effective Netherton Syndrome treatment.”
Norma’s story reflects the persistent challenges faced by patients living with this rare genetic disorder, including years of misdiagnosis, lack of awareness and limited medical guidance. For decades, she endured fragile skin, recurring rashes and brittle hair described as “bamboo hair”—a key characteristic of the disease. It wasn’t until her mid-50s that Norma was finally diagnosed, revealing a long-forgotten connection to Dr. Netherton himself, who studied her as a child at the Cleveland Clinic in the late 1940s.
“I guess I got it all started,” Norma says in the video, “but I didn’t know about it until I was 58.”
Her powerful reflection sheds light on how far the medical community has come, and how far it still must go. Today, 75 years after her first visit to Dr. Netherton, there remains no FDA-approved treatment for Netherton Syndrome.
Through the NETHERTON NOW campaign, Quoin is committed to raising awareness, improving education, and building advocacy for individuals and families affected by Netherton Syndrome. The video series is a central part of that effort, sharing real patient experiences to foster understanding of a disease that is often overlooked or misunderstood.
“Norma’s story reminds us why our work is critically important,” said Dr. Michael Myers, Co-Founder and Chief Executive Officer of Quoin Pharmaceuticals. “At a time when there are still no FDA-approved treatments for Netherton Syndrome, her experience illustrates both the long road so many patients have traveled and the urgency of delivering a transformative treatment option. Our ongoing clinical trials of QRX003 have generated encouraging initial data, including meaningful improvements in skin healing, clear reductions in painful inflammation and pruritus while leading to a much enhanced quality of life. We remain deeply committed to completing the development of what we hope will become the first approved treatment for this devastating disease. Stories like Norma’s fuel our determination every step of the way.”
Quoin’s lead product candidate, QRX003, is currently being evaluated in four clinical trials for the treatment of Netherton Syndrome. The Company’s goal is to develop the first FDA-approved therapy for the condition and provide meaningful support to a community that has waited far too long for answers.
About QRX003 QRX003 is a topical lotion formulated with a proprietary delivery technology that contains a broad-spectrum serine protease inhibitor, whose mechanism of action is intended to perform the function of a specific protein called LEKTI. The absence of LEKTI in Netherton patients leads to excessive skin shedding, resulting in a highly porous and compromised skin barrier. QRX003 is designed to promote a more normalized skin-shedding process and the formation of a stronger and more effective skin barrier. For more information about Quoin’s current clinical trials please visit: https://quoinpharma.com/pipeline/#trials
About Quoin Pharmaceuticals Ltd. Quoin Pharmaceuticals Ltd. is a 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 comprises four products in development that collectively have the potential to target a broad number of rare and orphan indications, including Netherton Syndrome, Peeling Skin Syndrome, Palmoplantar Keratoderma, Scleroderma, Epidermolysis Bullosa, Microcystic Lymphatic Malformations, Venous Malformations, Angiofibroma and others. For more information, visit: www.quoinpharma.com or LinkedIn for updates.
For more information about Netherton Syndrome, Quoin’s clinical programs, or to stay updated on the Netherton Now series, visit nethertonnow.com.
Cautionary Note Regarding Forward Looking Statements The Company cautions that statements in this press release that are not a description 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 “aim,” “design,” “expect,” “hope,” “intend,” “plan,” “anticipate,” “believe,” and “will,” among others. 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: Quoin aims to raising awareness, improving education, and building advocacy for individuals and families affected by Netherton Syndrome; completing the development of what Quoin hopes will become the first approved treatment for Netherton Syndrome; the Company’s goal to develop the first FDA-approved therapy for Netherton Syndrome and provide meaningful support to a community that has waited far too long for answers; the potential efficacy of QRX003 as a treatment for Netherton Syndrome; 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, Scleroderma, Epidermolysis Bullosa, Microcystic Lymphatic Malformations, Venous Malformations, Angiofibroma 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 deliver a safe and effective treatment for Netherton Syndrome; whether the Company’s studies are successful in generating data that is sufficiently robust and comprehensive to support an NDA filing for QRX003 as an approved treatment for Netherton Syndrome; and other factors discussed in the Company’s Annual Report on Form 10-K for the year ended December 31, 2024 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.
