{"id":817399,"date":"2025-02-25T07:33:47","date_gmt":"2025-02-25T12:33:47","guid":{"rendered":"https:\/\/www.marketnewsdesk.com\/index.php\/quoin-pharmaceuticals-launches-first-episode-of-netherton-now-video-series-to-raise-awareness-for-netherton-syndrome\/"},"modified":"2025-02-25T07:33:47","modified_gmt":"2025-02-25T12:33:47","slug":"quoin-pharmaceuticals-launches-first-episode-of-netherton-now-video-series-to-raise-awareness-for-netherton-syndrome","status":"publish","type":"post","link":"https:\/\/www.marketnewsdesk.com\/index.php\/quoin-pharmaceuticals-launches-first-episode-of-netherton-now-video-series-to-raise-awareness-for-netherton-syndrome\/","title":{"rendered":"Quoin Pharmaceuticals Launches First Episode of \u201cNETHERTON NOW\u201d Video Series to Raise Awareness for Netherton Syndrome"},"content":{"rendered":"

\nGlobal Premiere Set for Rare Disease Day, Feb. 28, 2025
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ASHBURN, Va., Feb. 25, 2025 (GLOBE NEWSWIRE) — Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) (\u201cQuoin\u201d or the \u201cCompany\u201d), a late clinical stage specialty pharmaceutical company focused on rare and orphan diseases, today announced the launch of the first episode in its \u201cLiving with Netherton\u201d 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<\/sup>, 2025.<\/p>\n

The \u201cLiving with Netherton\u201d series is part of Quoin\u2019s 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 \u201cNETHERTON NOW\u201d 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.<\/p>\n

The first episode of \u201cLiving with Netherton\u201d 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\u2019s 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\u2019s own persistence, after seven months and consultations with dozens of specialists her son was officially diagnosed with Netherton Syndrome\u2014only 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\u2019s 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.<\/p>\n

Future episodes of the \u201cNETHERTON NOW: Living with Netherton\u201d series will further explore patient and family experiences while emphasizing the need for greater awareness and treatment options.<\/p>\n

\u201cThe \u2018Living with Netherton\u2019 series is an opportunity to bring these stories to the forefront\u2014to make sure no family faces this journey alone,\u201d said Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals. \u201cNetherton 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.<\/p>\n

We are delighted to be able to launch this video series on Rare Disease Day 2025 because at Quoin we believe that \u201cRare diseases are only rare if you don\u2019t live with one\u00ae<\/sup>.\u201d With this video series, we aim to amplify that message and increase visibility for this community that has been underserved for entirely too long.\u201d<\/p>\n

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.<\/p>\n

Quoin Pharmaceuticals is dedicated to developing treatments for rare and orphan diseases, with a focus on Netherton Syndrome. The company\u2019s lead candidate, QRX003<\/a>, is currently being evaluated in four clinical trials. Recently announced clinical data<\/a> has underscored the product\u2019s potential efficacy as a treatment for the disease.<\/p>\n

The first episode of the \u201cLiving with Netherton\u201d series will be released on Rare Disease Day, Feb. 28, 2025, with the video premiering on YouTube at the following global debut times:<\/p>\n