Fourth installment highlights the painful, misunderstood nature of Netherton Syndrome and the urgent need for treatment advancements.
The late clinical-stage specialty pharmaceutical company dedicated to rare and orphan diseases Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX), has released the fourth episode of its NETHERTON NOW video series. The new segment features international patient advocate Mandy Aldwin-Easton, whose life and work have been shaped by her personal battle with Netherton Syndrome.
Aldwin-Easton, who serves as Medical and Communications Manager and Co-founder of the UK-based Ichthyosis Support Group, and President of the European Network for Ichthyosis, shares her deeply personal experience of living with the rare genetic skin disorder. Her story details the years-long delay in diagnosis, repeated hospitalizations, and the ongoing, unpredictable flare-ups that define the condition.
“One thing we don’t talk about is how incredibly painful skin is when it doesn’t work properly,” she says in the video. “Imagine millions of paper cuts all over your body. The one thing anybody wants with a rare disease like Netherton Syndrome is hope—that better treatments are on the way.”
Despite strong family support and her extensive advocacy work, Aldwin-Easton describes how extreme skin shedding, constant pain, and the absence of approved therapies have limited her daily life. Her account underscores the lack of awareness and the life-threatening potential of the disease.
Quoin COO Denise Carter praised Aldwin-Easton’s impact on the rare disease community, calling her “a pillar of the ichthyosis and Netherton Syndrome communities” whose advocacy brings attention to a population facing physical, emotional, and financial burdens. “We are honored to feature her in our NETHERTON NOW series and remain steadfast in our mission to bring awareness and hope to those living with this devastating disease,” Carter said.
The release of the episode comes as Quoin advances its lead product candidate, QRX003, through multiple pivotal clinical trials targeting Netherton Syndrome. Recently reported data from these studies have shown encouraging improvements in key clinical outcomes.
“Mandy’s story reflects the extraordinary strength and perseverance of patients who have endured a lifetime of suffering without access to an approved treatment,” said Dr. Michael Myers, Quoin’s CEO and Co-Founder. “As we advance QRX003 through late-stage trials, voices like Mandy’s reinforce the urgency of our mission.”
The full episode featuring Mandy Aldwin-Easton is available here.
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