In recognition of Rare Disease Day 2026, Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) announced that its NETHERTON NOW awareness campaign has garnered nearly 2 million video views and more than 24 million impressions globally since its launch in February 2025. The campaign, created to amplify the voices of patients, caregivers, and clinicians impacted by Netherton Syndrome—a rare genetic skin disorder with no approved treatment or cure—underscores the pressing need for greater visibility and research into this devastating disease.
Netherton Syndrome, caused by mutations in the SPINK5 gene, leads to excessive skin shedding, chronic inflammation, recurrent infections, and profound disruption of the skin barrier. The condition can be life-threatening, particularly in infancy, with an estimated 10-20% of newborns not surviving. Those who survive often face lifelong complications, severe pain, and significant quality-of-life burdens. Rare Disease Day, established in 2008 by EURORDIS, is observed annually on the last day of February to raise awareness of rare conditions that collectively affect hundreds of millions worldwide.
Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals, stated, '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. 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 released a new video titled 'If There Was a Cure,' featuring patients and families reflecting on what meaningful treatment progress would mean in their lives. The video can be viewed at https://youtu.be/AIcGZQEumF0?si=5d226QrYKR3m-hHC. Dr. Michael Myers, Co-Founder and CEO of Quoin Pharmaceuticals, emphasized, 'As we listen to the voices of this community, we are reminded that this growing awareness must be accompanied by action. Our responsibility includes advancing rigorous clinical research, pursuing regulatory pathways with discipline, and working to ensure broad access to potential treatments.'
Quoin's lead investigational candidate, QRX003, is currently being evaluated in late-stage pivotal clinical trials for Netherton Syndrome. The company remains committed to addressing the significant unmet medical needs of this community. For more information about Rare Disease Day, visit www.rarediseaseday.org. To learn more about Netherton Syndrome and the NETHERTON NOW campaign, visit https://nethertonnow.com.
