The a clinical-stage specialty pharmaceutical company focused on rare and orphan diseases, Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX), has released the second episode of its powerful “Living with Netherton” video series. The new installment, part of the company’s broader NETHERTON NOW awareness campaign, tells the remarkable story of Norma Coles—a 79-year-old woman whose connection to the rare genetic disorder dates back more than seven decades.
Norma’s diagnosis with Netherton Syndrome came at the age of 58, decades after being evaluated by the very physician who gave the disease its name—Dr. Edward Netherton. Her story captures the long, difficult journey many patients face in obtaining an accurate diagnosis and proper care.
“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 COO of Quoin. Carter expresses it is a powerful reminder that so many individuals are still undiagnosed, unheard, and unsupported.
Throughout her life, Norma lived with hallmark symptoms of the condition—fragile skin, persistent rashes, and the distinct brittle “bamboo hair.” Her case went unidentified for decades, despite being one of the earliest patients examined by Dr. Netherton himself at the Cleveland Clinic in the late 1940s.
“I guess I got it all started,” she says in the video. “But I didn’t know about it until I was 58.”
Now, 75 years after that first clinic visit, there is still no FDA-approved treatment for Netherton Syndrome.
Quoin hopes to change that. Its lead investigational therapy, QRX003, is currently being evaluated in four clinical trials. Early results have shown promise—including skin healing, reduction of painful inflammation and itch, and improved overall quality of life.
“Norma’s story reminds us why our work is critically important,” said Dr. Michael Myers, Quoin’s Co-Founder and CEO. Quoin’s management is committed to bringing the first approved treatment to the Netherton community as Norma’s journey is an inspiration for the company to keep pushing forward.
The “Living with Netherton” series is a key component of Quoin’s mission to build awareness, amplify patient voices, and foster understanding of a condition that is often overlooked. Through firsthand accounts like Norma’s, the campaign aims to shed light on the urgent needs of those living with this rare disorder.
To watch Norma’s story, visit: Watch Video
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.
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