NETHERTON NOW Campaign Raises Public Awareness for Netherton Syndrome

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In its latest advancement in working towards a treatment for Netherton Syndrome, Quoin Pharmaceuticals has established NETHERTON NOW.¹ The multi-pronged media campaign aims to shed light on the impacts the rare genetic disease can have on patients, their families, and clinicians.

“We regularly hear from members of the Netherton community about their deep sense of feeling unseen, unheard, and ignored. Because of the lack of awareness about Netherton Syndrome, it can sometimes take months, and even years, before these patients are properly diagnosed, and once they have that diagnosis, they are informed that there is currently no approved treatment or cure,” Denise Carter, Co-Founder and Chief Operating Officer of Quoin said in a statement.¹

A comprehensive library of resources, including research updates and educational materials, can be found on the interactive NETHERTON NOW website. Additionally, patients and their caregivers can share their own experiences and connect with others who have been affected by Netherton Syndrome.

“One key goal of our NETHERTON NOW campaign is to shine a spotlight on the urgent need for a better understanding of the profound physical, emotional, and social challenges people with this disease face every day. With the launch of the NETHERTON NOW campaign, we aim not only to raise awareness but also to foster advocacy, education, and compassion for those affected by this devastating disease. We continue to collaborate closely with clinicians, patients, families, and advocacy groups, and we deeply value the insights and the support these communities have provided in our efforts to bring hope to those impacted by the disease,” Carter added.¹

Patients with chronic Netherton Syndrome experience excess skin shedding with painful, red scaling and water loss. This can cause infections and further complications including asthma, allergies, skin cancer, and hospitalizations, severely impacting patients’ quality of life. According to Quoin, up to 20% of babies born with Netherton Syndrome do not survive. NETHERTON NOW highlights the need for more treatment options and overall public awareness, as the condition is commonly misdiagnosed and misunderstood.

Quoin’s QRX003 topical lotion is currently being tested in 4 distinct safety and efficacy studies, with hopes of becoming the first approved therapy for Netherton Syndrome. The most recent data, released in January, emphasized the clinical power of the product’s active ingredients while recognizing that benefits are completely reversed when the therapy is discontinued.² CEO of Quoin, Michael Myers, MD, commented on the continuing positive results and eventual next steps in a press release.

“The positive clinical data we’ve shared recently provides significant validation for QRX003 as a potentially safe and effective treatment for Netherton Syndrome. As we continue to assemble a robust data package in support of our regulatory approval filings in the US, EU, and in the 61 countries where we have established commercial partnerships, our commitment to the Netherton community is unwavering. Hearing from patients every day about the frustrations and challenges of living with this disease further fuels our determination to deliver a safe and effective treatment that can deliver hope where there is currently none.”¹

The NETHERON NOW website will be continuously refreshed with education materials, QRX003 updates, openings for clinical study participation, and more. Patients and families can also sign up to receive notifications from the stand-alone site.

“Until there is an FDA-approved therapy for Netherton Syndrome, we remain steadfast in our mission to bring this disease out of the shadows and in our unwavering commitment to delivering solutions that address it at its core,” Carter said. “The time to act is now—because everyone deserves to feel comfortable in their own skin.”¹

References

1. Quoin Pharmaceuticals launches ‘NETHERTON NOW’ Campaign to raise awareness of Netherton Syndrome, a rare genetic disease with no approved treatment or cure. News release. Globe Newswire. Published February 4, 2025. Accessed February 5, 2025. https://www.globenewswire.com/news-release/2025/02/04/3020192/0/en/Quoin-Pharmaceuticals-Launches-NETHERTON-NOW-Campaign-to-Raise-Awareness-of-Netherton-Syndrome-a-Rare-Genetic-Disease-with-No-Approved-Treatment-or-Cure.html

2. Quoin Pharmaceuticals announces further clinical evidence of QRX003 effectiveness in Netherton Syndrome. News release. BioSpace. Published January 23, 2025. Accessed February 5, 2025. https://www.biospace.com/press-releases/quoin-pharmaceuticals-announces-further-clinical-evidence-of-qrx003-effectiveness-in-netherton-syndrome