Quoin Pharmaceuticals Ltd. has highlighted the continued growth of its NETHERTON NOW awareness campaign in recognition of Rare Disease Day 2026. The campaign 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, 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. This reflects the positive impact of the campaign's message to grow awareness of this long-neglected disease. Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals, noted that the response has far surpassed anything anticipated, highlighting the courage of patients and families who chose to share their experiences. Individuals who had previously lived in silence with their suffering 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.
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. 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 of the disease must be accompanied by action. The responsibility extends beyond just creating visibility to include 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.
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.
