Quoin Pharmaceuticals Launches ‘NETHERTON NOW’ Campaign to Raise Awareness of Netherton Syndrome, a Rare Genetic Disease with No Approved Treatment or Cure
Quoin Pharmaceuticals (NASDAQ: QNRX) has launched the 'NETHERTON NOW' campaign to raise awareness about Netherton Syndrome, a rare genetic disease with no approved treatment. The condition affects newborns, with up to 20% mortality rate, causing excessive skin shedding, painful itching, and severe infections.
The company is currently conducting four clinical studies evaluating QRX003, their potential treatment for Netherton Syndrome. Recent clinical data has shown promising results, including photographic evidence of improvement after 12 weeks of treatment. A significant 'whole body' clinical study at Northwestern University, cleared by the FDA, is set to begin.
The campaign includes an interactive website serving as a resource hub for patients and families, providing educational materials and research updates. The initiative aims to address the challenges of diagnosis delays and lack of awareness while supporting the Netherton community through advocacy and education. Interested participants can sign up for clinical study alerts at nethertonnow.com.
Quoin Pharmaceuticals (NASDAQ: QNRX) ha lanciato la campagna 'NETHERTON NOW' per sensibilizzare riguardo alla Sindrome di Netherton, una rara malattia genetica senza trattamento approvato. La condizione colpisce i neonati, con un tasso di mortalità che può arrivare fino al 20%, causando un'eccessiva desquamazione della pelle, prurito doloroso e gravi infezioni.
L'azienda sta attualmente conducendo quattro studi clinici per valutare QRX003, il loro potenziale trattamento per la Sindrome di Netherton. Dati clinici recenti hanno mostrato risultati promettenti, inclusa evidenza fotografica di miglioramento dopo 12 settimane di trattamento. Uno studio clinico 'whole body' significativo presso la Northwestern University, autorizzato dalla FDA, è pronto a partire.
La campagna include un sito web interattivo che funge da hub informativo per pazienti e famiglie, fornendo materiali educativi e aggiornamenti sulla ricerca. L'iniziativa mira ad affrontare le sfide dei ritardi nella diagnosi e alla mancanza di consapevolezza, oltre a sostenere la comunità di Netherton attraverso l'advocacy e l'educazione. I partecipanti interessati possono iscriversi per ricevere avvisi sugli studi clinici su nethertonnow.com.
Quoin Pharmaceuticals (NASDAQ: QNRX) ha lanzado la campaña 'NETHERTON NOW' para crear conciencia sobre el Síndrome de Netherton, una enfermedad genética rara sin tratamiento aprobado. Esta condición afecta a los recién nacidos, con una tasa de mortalidad de hasta el 20%, provocando una excesiva pérdida de piel, picazón dolorosa e infecciones severas.
La compañía está llevando a cabo actualmente cuatro estudios clínicos para evaluar QRX003, su posible tratamiento para el Síndrome de Netherton. Los datos clínicos recientes han mostrado resultados prometedores, incluida evidencia fotográfica de mejoría después de 12 semanas de tratamiento. Un importante estudio clínico 'whole body' en la Universidad Northwestern, aprobado por la FDA, está listo para comenzar.
La campaña incluye un sitio web interactivo que funciona como un centro de recursos para pacientes y familias, proporcionando materiales educativos y actualizaciones de investigación. La iniciativa busca abordar los desafíos de los retrasos en el diagnóstico y la falta de conciencia mientras apoya a la comunidad de Netherton a través de la defensa y la educación. Los participantes interesados pueden inscribirse para recibir alertas sobre estudios clínicos en nethertonnow.com.
퀴온 제약 (NASDAQ: QNRX)이 'NETHERTON NOW' 캠페인을 시작하여 네더튼 증후군에 대한 인식을 높이고 있습니다. 이 병은 승인된 치료법이 없는 희귀 유전 질환으로, 신생아에게 영향을 미치며 최대 20%의 사망률을 나타냅니다. 이는 과도한 피부 탈락, 고통스러운 가려움증 및 심각한 감염을 유발합니다.
회사는 현재 네더튼 증후군에 대한 잠재적 치료제 QRX003을 평가하기 위해 네 개의 임상 연구를 진행하고 있습니다. 최근의 임상 데이터는 12주 치료 후 개선에 대한 사진 증거를 포함하여 유망한 결과를 보여주었습니다. FDA의 승인을 받은 노스웨스턴 대학교에서 '전신' 임상 연구가 곧 시작될 예정입니다.
이 캠페인은 환자와 가족을 위한 자원 허브 역할을 하는 대화형 웹사이트를 포함하고 있으며, 교육 자료와 연구 업데이트를 제공합니다. 이 이니셔티브는 진단 지연과 인식 부족의 문제를 해결하고, Advocacy와 교육을 통해 네더튼 커뮤니티를 지원하는 것을 목표로 합니다. 관심 있는 참가자는 nethertonnow.com에서 임상 연구 알림에 가입할 수 있습니다.
Quoin Pharmaceuticals (NASDAQ: QNRX) a lancé la campagne 'NETHERTON NOW' pour sensibiliser à la Syndrome de Netherton, une maladie génétique rare sans traitement approuvé. Cette condition touche les nouveau-nés, avec un taux de mortalité allant jusqu'à 20%, provoquant une desquamation excessive de la peau, des démangeaisons douloureuses et de graves infections.
L'entreprise mène actuellement quatre études cliniques pour évaluer QRX003, leur traitement potentiel pour la Syndrome de Netherton. Des données cliniques récentes ont montré des résultats prometteurs, y compris des preuves photographiques d'amélioration après 12 semaines de traitement. Une étude clinique significative 'whole body' à l'Université Northwestern, approuvée par la FDA, est sur le point de commencer.
La campagne comprend un site web interactif servant de plateforme d'informations pour les patients et leurs familles, fournissant des ressources éducatives et des mises à jour de recherche. L'initiative vise à s'attaquer aux défis des retards de diagnostic et du manque de sensibilisation tout en soutenant la communauté de Netherton par le biais de l'advocacy et de l'éducation. Les participants intéressés peuvent s'inscrire pour recevoir des alertes concernant les études cliniques sur nethertonnow.com.
Quoin Pharmaceuticals (NASDAQ: QNRX) hat die Kampagne 'NETHERTON NOW' ins Leben gerufen, um auf das Netherton-Syndrom aufmerksam zu machen, eine seltene genetische Erkrankung ohne zugelassene Behandlung. Diese Erkrankung betrifft Neugeborene mit einer Sterblichkeitsrate von bis zu 20% und verursacht übermäßigen Hautabschuppung, schmerzhafte Juckreiz und schwere Infektionen.
Das Unternehmen führt derzeit vier klinische Studien durch, um QRX003, ihre potenzielle Behandlung für das Netherton-Syndrom, zu bewerten. Jüngste klinische Daten haben vielversprechende Ergebnisse gezeigt, einschließlich fotografischer Beweise für Verbesserungen nach 12 Wochen Behandlung. Eine bedeutende klinische Studie 'whole body' an der Northwestern University, die von der FDA genehmigt wurde, soll bald beginnen.
Die Kampagne umfasst eine interaktive Website, die als Ressourcen-Hub für Patienten und Familien dient und Bildungsunterlagen sowie Forschungsupdates bereitstellt. Die Initiative zielt darauf ab, die Herausforderungen von Diagnosetypen und mangelnder Aufklärung anzugehen und die Netherton-Gemeinschaft durch Advocacy und Bildung zu unterstützen. Interessierte Teilnehmer können sich unter nethertonnow.com für klinische Studienbenachrichtigungen anmelden.
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- Multi-pronged media campaign to raise awareness about the disease and its impact on patients, family members and caregivers.
- Interactive, stand-alone NETHERTON NOW website launched.
- Quoin’s QRX003 product is on track to obtain the first regulatory approval for Netherton Syndrome.
ASHBURN, Va., Feb. 04, 2025 (GLOBE NEWSWIRE) -- Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) (the “Company” or “Quoin”), a clinical-stage specialty pharmaceutical company focused on rare and orphan diseases, has launched the “NETHERTON NOW” campaign to shed light on the profound and poorly understood impacts of Netherton Syndrome, a devastating genetic disease that has been significantly misdiagnosed in the past. It is estimated that up to
Netherton Syndrome patients suffer from excess skin shedding as well as red, scaly skin that can cause painful itching and severe infections that can potentially lead to hospitalization, asthma, allergies and possibly skin cancer. They are also susceptible to water loss through the skin’s surface and are always at risk of dehydration. This chronic condition severely impacts every aspect of life for patients and their families, yet it remains inadequately understood and poorly addressed by current treatment options.
Currently, Quoin is conducting four ongoing clinical studies evaluating the safety and efficacy of QRX003, in Netherton Syndrome patients. Recently announced clinical data by Quoin has underscored the product’s potential efficacy as a treatment for the disease. Quoin has also released photographic evidence highlighting the dramatic impact on a patient’s skin after 12 weeks of dosing with QRX003. These photographs are accessible via this link. https://quoinpharma.com/pipeline/#trials
“The positive clinical data we’ve shared recently provides significant validation for QRX003 as a potentially safe and effective treatment for Netherton Syndrome,” said Quoin CEO Dr. Michael Myers. “We are eagerly anticipating the initiation of our ‘whole body’ clinical study, which will be conducted by Dr. Amy Paller at Northwestern University. This groundbreaking study, which has been cleared to proceed by the U.S. Food and Drug Administration, is a landmark event in the clinical development of QRX003. 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.”
The NETHERTON NOW website serves as a comprehensive resource hub, providing a platform for patients and families to share experiences and build connections, while also offering educational materials and updates on research advancements to raise public awareness about Netherton Syndrome.
Quoin Co-Founder and Chief Operating Officer Denise Carter said, “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. 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.
“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. The time to act is now—because everyone deserves to feel comfortable in their own skin.”
Patients and families interested in participating in clinical studies or receiving updates can sign up for alerts at nethertonnow.com.
About Netherton Syndrome
Netherton Syndrome, a form of Ichthyosis, is a rare hereditary skin disorder caused by a mutation in the SPINK5 gene (serine protease inhibitor, Kazal Type 5) that leads to severe skin barrier defects and recurring infections, as well as a pronounced predisposition to allergies, asthma, and eczema. Patients often suffer from severe dehydration, chronic skin inflammation and stunted growth. Currently, there is no cure for Netherton Syndrome, nor are there any approved therapeutic treatments.
About QRX003
QRX003 is a topical lotion formulated with a proprietary delivery technology that contains a broad-spectrum serine protease inhibitor, whose mechanism of action is intended to perform the function of a specific protein called LEKTI. The absence of LEKTI in Netherton patients leads to excessive skin shedding, resulting in a highly porous and compromised skin barrier. QRX003 is designed to promote a more normalized skin-shedding process and the formation of a stronger and more effective skin barrier.
For more information about Quoin’s current clinical trials please visit: https://quoinpharma.com/pipeline/#trials
About Quoin Pharmaceuticals Ltd.
Quoin Pharmaceuticals Ltd. is a clinical-stage specialty pharmaceutical company focused on developing and commercializing therapeutic products that treat rare and orphan diseases. We are committed to addressing unmet medical needs for patients, their families, communities and care teams. Quoin’s innovative pipeline comprises four products in development that collectively have the potential to target a broad number of rare and orphan indications, including Netherton Syndrome, Peeling Skin Syndrome, Palmoplantar Keratoderma, Scleroderma, Epidermolysis Bullosa and others. For more information, visit: www.quoinpharma.com or LinkedIn for updates.
Cautionary Note Regarding Forward Looking Statements
The Company cautions that statements in this press release that are not a description of historical facts are forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. Forward-looking statements may be identified by the use of words referencing future events or circumstances such as “expect,” “intend,” “plan,” “anticipate,” “believe,” and “will,” among others. All statements that reflect the Company’s expectations, assumptions, projections, beliefs, or opinions about the future, other than statements of historical fact, are forward-looking statements, including, without limitation, the potential efficacy of QRX003 as a treatment for Netherton Syndrome, anticipating the initiation of our ‘whole body’ clinical study, which will be conducted by Dr. Amy Paller at Northwestern University, aim not only to raise awareness but also to foster advocacy, education, and compassion for those affected by this devastating disease, QRX003 product is on track to obtain the first regulatory approval for Netherton Syndrome ,and Quoin’s products in development collectively having the potential to target a broad number of rare and orphan indications, including Netherton Syndrome, Peeling Skin Syndrome, Palmoplantar Keratoderma, Scleroderma, Epidermolysis Bullosa and others. Because such statements are subject to risks and uncertainties, actual results may differ materially from those expressed or implied by such forward-looking statements. These forward-looking statements are based upon the Company’s current expectations and involve assumptions that may never materialize or may prove to be incorrect. Actual results and the timing of events could differ materially from those anticipated in such forward-looking statements as a result of various risks and uncertainties including, but not limited to, the Company’s ability to deliver a safe and effective treatment for Netherton Syndrome, the Company’s studies may not be successful or may not generate data which is sufficiently robust and comprehensive to support an NDA filing for QRXOO3 as an approved treatment for Netherton Syndrome and other factors discussed in the Company’s Annual Report on Form 10-K for the year ended December 31, 2023 and in other filings the Company has made and may make with the SEC in the future. One should not place undue reliance on these forward-looking statements, which speak only as of the date on which they were made. The Company undertakes no obligation to update such statements to reflect events that occur or circumstances that exist after the date on which they were made, except as may be required by law.
For further information, contact:
Quoin Pharmaceuticals Ltd.
Michael Myers, Ph.D., CEO
mmyers@quoinpharma.com
Investor Relations
PCG Advisory
Jeff Ramson
jramson@pcgadvisory.com
(646) 863-6341
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FAQ
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