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Quoin Pharmaceuticals Launches First Episode of “NETHERTON NOW” Video Series to Raise Awareness for Netherton Syndrome

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Quoin Pharmaceuticals (NASDAQ: QNRX) announced the launch of its "Living with Netherton" video series, part of the broader NETHERTON NOW campaign. The first episode will premiere on Rare Disease Day, February 28, 2025, featuring Carmon McTigue's story about her son's difficult journey with Netherton Syndrome.

The series aims to raise awareness about this devastating genetic disorder caused by mutations in the SPINK5 gene, which leads to excessive skin shedding, painful inflammation, recurrent infections, and other complications. Up to 20% of babies born with this condition do not survive.

Carmon's story highlights the challenges families face, including delayed diagnosis, misdiagnosis, and lack of treatment options. Her son was hospitalized 15-20 times in his early years due to severe infections.

Quoin's lead candidate, QRX003, is currently being evaluated in four clinical trials, with recent data showing potential efficacy. The video will premiere globally on YouTube at various times across different time zones, with the NETHERTON NOW website serving as a resource hub for patients and families.

Quoin Pharmaceuticals (NASDAQ: QNRX) ha annunciato il lancio della sua serie di video "Living with Netherton", parte della più ampia campagna NETHERTON NOW. Il primo episodio avrà la sua premiere il Rare Disease Day, 28 febbraio 2025, presentando la storia di Carmon McTigue riguardo al difficile percorso di suo figlio con la Sindrome di Netherton.

La serie ha l'obiettivo di sensibilizzare riguardo a questo devastante disturbo genetico causato da mutazioni nel gene SPINK5, che porta a una eccessiva desquamazione della pelle, infiammazione dolorosa, infezioni ricorrenti e altre complicazioni. Fino al 20% dei neonati nati con questa condizione non sopravvive.

La storia di Carmon evidenzia le sfide che le famiglie affrontano, inclusi diagnosi tardive, diagnosi errate e mancanza di opzioni terapeutiche. Suo figlio è stato ricoverato in ospedale 15-20 volte nei suoi primi anni a causa di gravi infezioni.

Il principale candidato di Quoin, QRX003, è attualmente in fase di valutazione in quattro studi clinici, con dati recenti che mostrano una potenziale efficacia. Il video sarà trasmesso globalmente su YouTube in vari orari attraverso i diversi fusi orari, con il sito web NETHERTON NOW che fungerà da hub di risorse per pazienti e famiglie.

Quoin Pharmaceuticals (NASDAQ: QNRX) anunció el lanzamiento de su serie de videos "Living with Netherton", parte de la más amplia campaña NETHERTON NOW. El primer episodio se estrenará el Día de las Enfermedades Raras, 28 de febrero de 2025, presentando la historia de Carmon McTigue sobre el difícil camino de su hijo con el Síndrome de Netherton.

La serie tiene como objetivo aumentar la conciencia sobre este devastador trastorno genético causado por mutaciones en el gen SPINK5, que lleva a una excesiva pérdida de piel, inflamación dolorosa, infecciones recurrentes y otras complicaciones. Hasta el 20% de los bebés nacidos con esta condición no sobreviven.

La historia de Carmon destaca los desafíos que enfrentan las familias, incluyendo diagnósticos tardíos, diagnósticos erróneos y falta de opciones de tratamiento. Su hijo fue hospitalizado de 15 a 20 veces en sus primeros años debido a infecciones severas.

El principal candidato de Quoin, QRX003, está siendo evaluado actualmente en cuatro ensayos clínicos, con datos recientes que muestran una potencial eficacia. El video se estrenará globalmente en YouTube a diferentes horas en varias zonas horarias, y el sitio web de NETHERTON NOW servirá como un centro de recursos para pacientes y familias.

Quoin Pharmaceuticals (NASDAQ: QNRX)는 "Living with Netherton" 비디오 시리즈의 출시를 발표했습니다. 이는 더 넓은 NETHERTON NOW 캠페인의 일환입니다. 첫 번째 에피소드는 희귀질환의 날인 2025년 2월 28일에 공개되며, Carmon McTigue가 아들의 Netherton 증후군과의 힘든 여정을 이야기합니다.

이 시리즈는 SPINK5 유전자의 돌연변이에 의해 발생하는 이 치명적인 유전 질환에 대한 인식을 높이는 것을 목표로 합니다. 이 질환은 과도한 피부 탈락, 고통스러운 염증, 반복적인 감염 및 기타 합병증으로 이어집니다. 이 질환을 가진 아기 중 최대 20%가 생존하지 못합니다.

Carmon의 이야기는 가족들이 직면하는 도전 과제를 강조합니다. 여기에는 지연된 진단, 오진 및 치료 옵션의 부족이 포함됩니다. 그녀의 아들은 심각한 감염으로 인해 어린 시절에 15-20번 입원했습니다.

Quoin의 주요 후보인 QRX003는 현재 네 개의 임상 시험에서 평가되고 있으며, 최근 데이터는 잠재적인 효능을 보여줍니다. 이 비디오는 다양한 시간대에서 YouTube에서 전 세계적으로 공개되며, NETHERTON NOW 웹사이트는 환자와 가족을 위한 리소스 허브 역할을 할 것입니다.

Quoin Pharmaceuticals (NASDAQ: QNRX) a annoncé le lancement de sa série de vidéos "Living with Netherton", qui fait partie de la plus large campagne NETHERTON NOW. Le premier épisode sera diffusé le Journée des Maladies Rares, le 28 février 2025, mettant en avant l'histoire de Carmon McTigue sur le difficile parcours de son fils avec le Syndrome de Netherton.

La série vise à sensibiliser sur ce trouble génétique dévastateur causé par des mutations du gène SPINK5, qui entraîne une desquamation excessive de la peau, des inflammations douloureuses, des infections récurrentes et d'autres complications. Jusqu'à 20 % des bébés nés avec cette condition ne survivent pas.

L'histoire de Carmon met en lumière les défis auxquels les familles sont confrontées, y compris les diagnostics tardifs, les erreurs de diagnostic et le manque d'options de traitement. Son fils a été hospitalisé de 15 à 20 fois au cours de ses premières années en raison d'infections sévères.

Le principal candidat de Quoin, QRX003, est actuellement évalué dans quatre essais cliniques, avec des données récentes montrant une efficacité potentielle. La vidéo sera diffusée mondialement sur YouTube à différents moments selon les fuseaux horaires, le site web de NETHERTON NOW servant de centre de ressources pour les patients et les familles.

Quoin Pharmaceuticals (NASDAQ: QNRX) hat die Einführung seiner Video-Serie "Living with Netherton" angekündigt, die Teil der umfassenderen NETHERTON NOW Kampagne ist. Die erste Episode wird am Tag der seltenen Krankheiten, dem 28. Februar 2025, Premiere haben und erzählt die Geschichte von Carmon McTigue über den schwierigen Weg ihres Sohnes mit Netherton-Syndrom.

Die Serie zielt darauf ab, das Bewusstsein für diese verheerende genetische Störung zu schärfen, die durch Mutationen im SPINK5-Gen verursacht wird und zu übermäßigem Hautabwurf, schmerzhaften Entzündungen, wiederkehrenden Infektionen und anderen Komplikationen führt. Bis zu 20% der mit dieser Erkrankung geborenen Babys überleben nicht.

Carmons Geschichte hebt die Herausforderungen hervor, mit denen Familien konfrontiert sind, einschließlich verspäteter Diagnosen, Fehldiagnosen und mangelnder Behandlungsmöglichkeiten. Ihr Sohn wurde in seinen frühen Jahren 15-20 Mal aufgrund schwerer Infektionen ins Krankenhaus eingeliefert.

Quoins Hauptkandidat, QRX003, wird derzeit in vier klinischen Studien bewertet, wobei aktuelle Daten auf eine potenzielle Wirksamkeit hinweisen. Das Video wird weltweit zu verschiedenen Zeiten in verschiedenen Zeitzonen auf YouTube Premiere haben, während die NETHERTON NOW-Website als Ressourcen-Hub für Patienten und Familien dient.

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Global Premiere Set for Rare Disease Day, Feb. 28, 2025

ASHBURN, Va., Feb. 25, 2025 (GLOBE NEWSWIRE) -- Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) (“Quoin” or the “Company”), a late clinical stage specialty pharmaceutical company focused on rare and orphan diseases, today announced the launch of the first episode in its “Living with Netherton” video series dedicated to giving voice to the patients and families directly impacted by Netherton Syndrome. The first episode will be aired on Rare Disease Day, February 28th, 2025.

The “Living with Netherton” series is part of Quoin’s broader NETHERTON NOW campaign designed to shed light on the profound and poorly understood impacts of Netherton Syndrome, a devastating genetic disease that until now has been largely unknown. Through its “NETHERTON NOW” campaign Quoin aims to raise awareness and foster advocacy, education, compassion and a greater understanding of what life is like for those whose lives are impacted by this devastating disease.

The first episode of “Living with Netherton” features Carmon McTigue, whose son was born with Netherton Syndrome. At first, doctors were not able to diagnose which disease her son had, leading to much anxiety and stress for the family. As a result, Carmon and her husband were sent home from the hospital with no definitive answers about their son’s condition. To compound matters, they subsequently were given a misdiagnosis of Epidermolysis Bullosa, a very different disease, but still no definitive treatment plan was offered to them. Finally, through Carmon’s own persistence, after seven months and consultations with dozens of specialists her son was officially diagnosed with Netherton Syndrome—only for the family to be faced with the harsh reality that there is no approved treatment or cure. In addition to suffering from failure to thrive multiple times, he was hospitalized 15-20 times in his first few years of life due to severe infections. He subsequently developed a resistance to oral antibiotics and contracted MRSA, leading doctors to resort to treating him with IV antibiotics. Carmon and her family’s story clearly shows the devastating impacts of this disease whilst underscoring the courage and commitment of one family to live the best life possible in the face of often overwhelming circumstances.

Future episodes of the “NETHERTON NOW: Living with Netherton” series will further explore patient and family experiences while emphasizing the need for greater awareness and treatment options.

“The ‘Living with Netherton’ series is an opportunity to bring these stories to the forefront—to make sure no family faces this journey alone,” said Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals. “Netherton Syndrome remains poorly understood, and families often struggle for months, or even years, to obtain an accurate diagnosis. Through this campaign, we hope to raise awareness about the profound physical, emotional and social challenges of living with this disease.

We are delighted to be able to launch this video series on Rare Disease Day 2025 because at Quoin we believe that “Rare diseases are only rare if you don’t live with one®.” With this video series, we aim to amplify that message and increase visibility for this community that has been underserved for entirely too long.”

Netherton Syndrome is a severe and often misdiagnosed genetic disorder, caused by mutations in the SPINK5 gene, leading to excessive skin shedding, painful inflammation, recurrent infections, dehydration, and a high risk of complications such as asthma, allergies, and skin cancer. Up to 20% of babies born with Netherton Syndrome do not survive, underscoring the urgent need for greater awareness and research.

Quoin Pharmaceuticals is dedicated to developing treatments for rare and orphan diseases, with a focus on Netherton Syndrome. The company’s lead candidate, QRX003, is currently being evaluated in four clinical trials. Recently announced clinical data has underscored the product’s potential efficacy as a treatment for the disease.

The first episode of the “Living with Netherton” series will be released on Rare Disease Day, Feb. 28, 2025, with the video premiering on YouTube at the following global debut times:

  • 8 a.m. ET (New York)
  • 1 p.m. GMT (London)
  • 5 p.m. GST (Dubai)
  • 10 p.m. JST (Tokyo)

Viewers can watch the premiere and set reminders at: https://www.youtube.com/@QUOINPHARMACEUTICALS

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.

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.

For more information about Netherton Syndrome, Quoin’s clinical programs, or to stay updated on the Netherton Now series, visit nethertonnow.com.

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 “aim,” “design,” “expect,” “hope,” “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, statements relating to: Quoin aims to raise awareness and foster advocacy, education, compassion and a greater understanding of what is like for those whose lives are impacted by Netherton Syndrome; the potential efficacy of QRX003 as a treatment 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; whether the Company’s studies are successful in generating data that is sufficiently robust and comprehensive to support an NDA filing for QRX003 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


FAQ

When will Quoin Pharmaceuticals (QNRX) release the first episode of its Netherton Syndrome video series?

The first episode of Quoin's "Living with Netherton" video series will premiere on Rare Disease Day, February 28, 2025, with global release times across different time zones.

What is Netherton Syndrome and how is QNRX addressing it?

Netherton Syndrome is a severe genetic disorder caused by SPINK5 gene mutations, leading to excessive skin shedding, inflammation, and infections. Quoin Pharmaceuticals is developing QRX003, currently in four clinical trials, as a potential treatment.

How does Netherton Syndrome affect children according to QNRX's campaign?

According to Quoin's campaign, Netherton Syndrome can cause failure to thrive, frequent hospitalizations, severe infections, antibiotic resistance, and has up to 20% mortality rate in infants born with the condition.

What is the purpose of Quoin Pharmaceuticals' NETHERTON NOW campaign?

The NETHERTON NOW campaign aims to raise awareness, foster advocacy, provide education, and create greater understanding of Netherton Syndrome while highlighting the experiences of affected patients and families.

Where can investors and families access Quoin's (QNRX) Netherton Syndrome video series?

The video series will premiere on YouTube at https://www.youtube.com/@QUOINPHARMACEUTICALS, with the NETHERTON NOW website serving as a comprehensive resource hub for patients, families, and interested parties.

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