Global Premiere Set for Rare Disease Day, Feb. 28, 2025
ASHBURN, Va., Feb. 25, 2025 (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 launch of the first episode in its “Living with Netherton” video series dedicated to giving voice to the patients and families directly impacted by Netherton Syndrome. The first episode will be aired on Rare Disease Day, February 28th, 2025.
The “Living with Netherton” series is part of Quoin’s broader NETHERTON NOW campaign designed to shed light on the profound and poorly understood impacts of Netherton Syndrome, a devastating genetic disease that until now has been largely unknown. Through its “NETHERTON NOW” campaign Quoin aims to raise awareness and foster advocacy, education, compassion and a greater understanding of what life is like for those whose lives are impacted by this devastating disease.
The first episode of “Living with Netherton” features Carmon McTigue, whose son was born with Netherton Syndrome. At first, doctors were not able to diagnose which disease her son had, leading to much anxiety and stress for the family. As a result, Carmon and her husband were sent home from the hospital with no definitive answers about their son’s condition. To compound matters, they subsequently were given a misdiagnosis of Epidermolysis Bullosa, a very different disease, but still no definitive treatment plan was offered to them. Finally, through Carmon’s own persistence, after seven months and consultations with dozens of specialists her son was officially diagnosed with Netherton Syndrome—only for the family to be faced with the harsh reality that there is no approved treatment or cure. In addition to suffering from failure to thrive multiple times, he was hospitalized 15-20 times in his first few years of life due to severe infections. He subsequently developed a resistance to oral antibiotics and contracted MRSA, leading doctors to resort to treating him with IV antibiotics. Carmon and her family’s story clearly shows the devastating impacts of this disease whilst underscoring the courage and commitment of one family to live the best life possible in the face of often overwhelming circumstances.
Future episodes of the “NETHERTON NOW: Living with Netherton” series will further explore patient and family experiences while emphasizing the need for greater awareness and treatment options.
“The ‘Living with Netherton’ series is an opportunity to bring these stories to the forefront—to make sure no family faces this journey alone,” said Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals. “Netherton Syndrome remains poorly understood, and families often struggle for months, or even years, to obtain an accurate diagnosis. Through this campaign, we hope to raise awareness about the profound physical, emotional and social challenges of living with this disease.
We are delighted to be able to launch this video series on Rare Disease Day 2025 because at Quoin we believe that “Rare diseases are only rare if you don’t live with one®.” With this video series, we aim to amplify that message and increase visibility for this community that has been underserved for entirely too long.”
Netherton Syndrome is a severe and often misdiagnosed genetic disorder, caused by mutations in the SPINK5 gene, leading to excessive skin shedding, painful inflammation, recurrent infections, dehydration, and a high risk of complications such as asthma, allergies, and skin cancer. Up to 20% of babies born with Netherton Syndrome do not survive, underscoring the urgent need for greater awareness and research.
Quoin Pharmaceuticals is dedicated to developing treatments for rare and orphan diseases, with a focus on Netherton Syndrome. The company’s lead candidate, QRX003, is currently being evaluated in four clinical trials. Recently announced clinical data has underscored the product’s potential efficacy as a treatment for the disease.
The first episode of the “Living with Netherton” series will be released on Rare Disease Day, Feb. 28, 2025, with the video premiering on YouTube at the following global debut times:
- 8 a.m. ET (New York)
- 1 p.m. GMT (London)
- 5 p.m. GST (Dubai)
- 10 p.m. JST (Tokyo)
Viewers can watch the premiere and set reminders at: https://www.youtube.com/@QUOINPHARMACEUTICALS
The NETHERTON NOW website serves as a comprehensive resource hub, providing a platform for patients and families to share experiences and build connections, while also offering educational materials and updates on research advancements to raise public awareness about Netherton Syndrome.
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 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 raise awareness and foster advocacy, education, compassion and a greater understanding of what is like for those whose lives are impacted by Netherton Syndrome; 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 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, 2023 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
[email protected]
Investor Relations
PCG Advisory
Jeff Ramson
[email protected]
(646) 863-6341
