Quoin Pharmaceuticals Ltd. has highlighted the continued growth of its NETHERTON NOW awareness campaign in recognition of Rare Disease Day 2026, with the initiative generating nearly 2 million video views and more than 24 million impressions globally. The campaign, launched at the beginning of Rare Disease Month 2025, seeks to amplify the voices of patients, caregivers, and clinicians impacted by Netherton Syndrome, a rare genetic disease with no approved treatment or cure.
Netherton Syndrome is 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.
Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals, noted that the campaign's response has far surpassed initial expectations. "What stands out most is the courage of the patients and families who chose to share their experiences," Carter said. "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."
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. The full video can be viewed at https://youtu.be/AIcGZQEumF0?si=5d226QrYKR3m-hHC.
Dr. Michael Myers, Co-Founder and Chief Executive Officer of Quoin Pharmaceuticals, emphasized that growing awareness must be accompanied by action. "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," Myers said. "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. For more information about Rare Disease Day, visit www.rarediseaseday.org. To learn more about Netherton Syndrome and the NETHERTON NOW awareness campaign, visit https://nethertonnow.com.
