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NETHERTON NOW Recognizes Rare Disease Day and Highlights Growing Global Awareness of Netherton Syndrome

NETHERTON NOW Recognizes Rare Disease Day and Highlights Growing Global Awareness of Netherton Syndrome

FinvizFinviz2026/02/26 13:33
By:Finviz

Videos on the NETHERTON NOW website have been viewed 2 million times with 24 million impressions

Patients, families, and clinicians share the reality of living with Netherton Syndrome, a rare genetic skin disease with no approved treatment, and the enduring hope for a cure

ASHBURN, Va., Feb. 26, 2026 (GLOBE NEWSWIRE) -- In recognition of Rare Disease Day® 2026, Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) today highlighted the continued growth of its NETHERTON NOW awareness campaign, which seeks to amplify the voices of patients, caregivers and clinicians impacted by Netherton Syndrome, a rare genetic disease with no approved treatment or cure.

Rare Disease Day, observed annually on the last day of February during Rare Disease Month, was established in 2008 by EURORDIS to raise awareness of rare conditions and the profound challenges faced by those living with them. While each rare disease affects a relatively small population, collectively rare diseases impact hundreds of millions of people worldwide.

Launched at the beginning of Rare Disease Month 2025, NETHERTON NOW was created by Quoin Pharmaceuticals to bring greater visibility to Netherton Syndrome, a rare and often devastating genetic skin disorder caused by mutations in the SPINK5 gene. The condition leads to excessive skin shedding, chronic inflammation, recurrent infections, dehydration, and profound disruption of the skin barrier. The disease can be life-threatening, particularly in infancy, with an estimated 10–20% of newborns with Netherton Syndrome not surviving. Those who do survive often endure lifelong complications, severe pain, and significant quality-of-life burdens.

Through patient and caregiver stories, clinical perspectives and educational content, Quoin’s NETHERTON NOW awareness campaign has generated nearly 2 million video views and more than 24 million impressions globally, reflecting the positive impact of the campaign’s message to grow awareness of this long-neglected disease.

“When we launched NETHERTON NOW at the beginning of Rare Disease Month last year, we hoped it would resonate, but the response has far surpassed anything we anticipated,” said Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals. “Nearly 2 million video views and more than 24 million impressions later, what stands out most is the courage of the patients and families who chose to share their experiences. Individuals who had previously lived in silence with their suffering at the hands of this disease now have a platform to share their stories, connect with one another, and help bring greater understanding of Netherton Syndrome to the broader medical and advocacy communities. That expanded awareness is exactly what this campaign was meant to create.”

In conjunction with Rare Disease Day, the campaign recently released its latest video, “If There Was a Cure,” featuring patients and families reflecting on what meaningful treatment progress would mean in their lives. The video underscores the daily realities of living with Netherton Syndrome and the shared hope within the community for improved treatment options.

“As we listen to the voices of this community, we are reminded that this growing awareness of the disease must be accompanied by action,” said Dr. Michael Myers, Co-Founder and Chief Executive Officer of Quoin Pharmaceuticals. “Our responsibility extends beyond just creating visibility. It includes advancing rigorous clinical research, pursuing regulatory pathways with discipline, and working to ensure broad access to potential treatments. Patients and families deserve not only to be seen and heard, but to have safe, effective, and accessible treatments.”

Quoin’s lead investigational candidate, QRX003, is currently being evaluated in late-stage pivotal clinical trials for the treatment of Netherton Syndrome. The Company remains committed to addressing the significant unmet medical needs faced by patients and families impacted by this devastating disease.

About Quoin Pharmaceuticals Ltd.

Quoin Pharmaceuticals Ltd. is a late 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, microcystic lymphatic malformations, venous malformations, angiofibromas and others.

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Disclaimer: The content of this article solely reflects the author's opinion and does not represent the platform in any capacity. This article is not intended to serve as a reference for making investment decisions.

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