In recognition of Rare Disease Day 2026, Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) announced that its NETHERTON NOW awareness campaign has reached nearly 2 million video views and more than 24 million impressions globally, reflecting increased attention on Netherton Syndrome, a rare and often life-threatening genetic skin disorder.
Launched at the beginning of Rare Disease Month 2025, the campaign aims to amplify the voices of patients, caregivers and clinicians affected by the condition, which is caused by mutations in the SPINK5 gene and leads to excessive skin shedding, chronic inflammation, recurrent infections and severe dehydration. An estimated 10–20% of newborns with Netherton Syndrome do not survive, and those who do often face lifelong complications and significant quality-of-life burdens.
Denise Carter, co-founder and chief operating officer of Quoin Pharmaceuticals, said the campaign's impact has far surpassed expectations. “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,” Carter said.
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. The video is available at https://youtu.be/AIcGZQEumF0.
Dr. Michael Myers, co-founder and chief executive officer of Quoin Pharmaceuticals, emphasized that 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.
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 faced by patients and families impacted by this devastating disease.
Rare Disease Day, established in 2008 by EURORDIS, is observed annually on the last day of February to raise awareness of rare conditions and the challenges faced by those living with them. For more information about Rare Disease Day, visit www.rarediseaseday.org. Additional details about Netherton Syndrome and the NETHERTON NOW campaign can be found at https://nethertonnow.com.
