NETHERTON NOW Campaign Gains Global Traction, Amplifying Voices of Rare Disease Community

Quoin Pharmaceuticals Ltd. 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 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.

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. ‘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.’

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.

‘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.’ Quoin’s lead investigational candidate, QRX003, is currently being evaluated in late-stage pivotal clinical trials for the treatment of Netherton Syndrome. 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.

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