Quoin Pharmaceuticals Releases Fifth NETHERTON NOW Video Featuring Writers and Influencers Allie and Kaleigh Fasanella, Twin Sisters Living with Netherton Syndrome
Quoin Pharmaceuticals (NASDAQ: QNRX) has released the fifth episode of its NETHERTON NOW video series, featuring twin sisters Allie and Kaleigh Fasanella, both living with Netherton Syndrome. The episode highlights the physical, emotional, and social challenges of living with this rare genetic skin disease.
The sisters, who are successful freelance writers for major publications like Allure and Teen Vogue, share their experiences with unpredictable flare-ups, constant pain, and mental health challenges since being diagnosed in their first year of life. The video release coincides with Quoin's advancement of QRX003, their lead product candidate for Netherton Syndrome, currently in pivotal clinical trials with encouraging early data.
Quoin Pharmaceuticals (NASDAQ: QNRX) ha pubblicato il quinto episodio della serie video NETHERTON NOW, che vede protagoniste le sorelle gemelle Allie e Kaleigh Fasanella, entrambe affette dalla sindrome di Netherton. L'episodio mette in luce le difficoltà fisiche, emotive e sociali legate a questa rara malattia genetica della pelle.
Le sorelle, affermate freelance che scrivono per testate come Allure e Teen Vogue, raccontano le loro esperienze con flare-up imprevedibili, dolore costante e problemi di salute mentale fin dalla diagnosi nel primo anno di vita. L'uscita del video coincide con i progressi di Quoin sul QRX003, il loro principale candidato terapeutico per la sindrome di Netherton, attualmente in studi clinici pivotal con dati preliminari promettenti.
Quoin Pharmaceuticals (NASDAQ: QNRX) ha lanzado el quinto episodio de su serie de videos NETHERTON NOW, protagonizado por las hermanas gemelas Allie y Kaleigh Fasanella, ambas con síndrome de Netherton. El episodio destaca los retos físicos, emocionales y sociales de vivir con esta rara enfermedad genética de la piel.
Las hermanas, escritoras independientes con trabajos en publicaciones como Allure y Teen Vogue, comparten sus vivencias con brotes impredecibles, dolor constante y dificultades de salud mental desde que fueron diagnosticadas en su primer año de vida. El estreno del video coincide con el avance de Quoin en QRX003, su candidato principal para el síndrome de Netherton, actualmente en ensayos clínicos pivotal con datos iniciales alentadores.
Quoin Pharmaceuticals (NASDAQ: QNRX)가 NETHERTON NOW 비디오 시리즈의 다섯 번째 에피소드를 공개했습니다. 이번 편에는 네트허턴 증후군을 앓고 있는 쌍둥이 자매 Allie 및 Kaleigh Fasanella가 출연하여 이 희귀 유전성 피부질환이 주는 신체적·정서적·사회적 어려움을 조명합니다.
Allure와 Teen Vogue 같은 주요 매체에 글을 기고하는 성공적인 프리랜서 작가인 자매는 예측할 수 없는 악화, 지속적인 통증, 어린 시절 첫해 진단 이후 겪어온 정신 건강 문제 등을 공유합니다. 이번 영상 공개는 Quoin의 주요 후보물질 QRX003의 개발 진전에 맞춰 이루어졌으며, 해당 약물은 현재 유망한 초기 데이터를 바탕으로 중대한 임상시험 단계에 있습니다.
Quoin Pharmaceuticals (NASDAQ: QNRX) a publié le cinquième épisode de sa série vidéo NETHERTON NOW, mettant en scène les sœurs jumelles Allie et Kaleigh Fasanella, toutes deux atteintes du syndrome de Netherton. L'épisode met en avant les difficultés physiques, émotionnelles et sociales liées à cette maladie génétique rare de la peau.
Les sœurs, rédactrices indépendantes reconnues ayant publié dans des titres comme Allure et Teen Vogue, partagent leurs expériences de poussées imprévisibles, de douleurs constantes et de problèmes de santé mentale depuis leur diagnostic durant leur première année de vie. La diffusion de la vidéo coïncide avec l'avancement par Quoin de QRX003, leur principal candidat médicament pour le syndrome de Netherton, actuellement en essais cliniques pivots avec des données initiales encourageantes.
Quoin Pharmaceuticals (NASDAQ: QNRX) hat die fünfte Folge seiner Video-Reihe NETHERTON NOW veröffentlicht, in der die Zwillingsschwestern Allie und Kaleigh Fasanella zu sehen sind – beide leben mit dem Netherton-Syndrom. Die Folge beleuchtet die physischen, emotionalen und sozialen Herausforderungen im Umgang mit dieser seltenen genetischen Hauterkrankung.
Die Schwestern, erfolgreiche freiberufliche Autorinnen für Publikationen wie Allure und Teen Vogue, berichten von unvorhersehbaren Schüben, anhaltenden Schmerzen und psychischen Belastungen seit ihrer Diagnose im ersten Lebensjahr. Die Veröffentlichung des Videos fällt mit dem Fortschritt von Quoin in Bezug auf QRX003 zusammen, ihrem führenden Produktkandidaten gegen das Netherton-Syndrom, der sich derzeit in entscheidenden klinischen Studien mit vielversprechenden frühen Daten befindet.
- Early clinical trials of QRX003 show encouraging improvements in key outcomes
- Company advancing lead product candidate towards potential first approved therapy for Netherton Syndrome
- Successful NETHERTON NOW campaign increasing disease awareness over past 6 months
- None.
Insights
Quoin's patient story video highlights Netherton Syndrome's impact while their treatment advances in pivotal trials with encouraging early data.
Quoin Pharmaceuticals has released the fifth installment of their NETHERTON NOW video series, featuring twin sisters Allie and Kaleigh Fasanella. This ongoing awareness campaign provides valuable insights into the devastating physical, emotional, and social impact of Netherton Syndrome, a rare genetic skin disease. Beyond raising disease awareness, this release contains material information for investors regarding Quoin's lead product candidate, QRX003.
The press release confirms QRX003 is advancing in pivotal clinical trials - the final stage before potential regulatory submission. More significantly, the company notes that "early data have shown encouraging improvements in key clinical outcomes" for their experimental treatment. This represents tangible progress for their lead asset targeting a condition with no currently approved therapies.
For a small pharma company focused on rare diseases, this dual approach of building disease awareness while advancing clinical programs is strategically sound. The personal stories highlighted in these videos underscore the significant unmet medical need, which strengthens the market potential for an effective treatment. The campaign's positive reception mentioned by the CEO suggests growing awareness that could accelerate patient recruitment for trials and potentially enhance the commercial launch if QRX003 gains approval.
The company's investment in patient advocacy through this campaign demonstrates commitment to the therapeutic area while the advancement in pivotal trials with positive early signals represents concrete progress toward their goal of bringing the first approved therapy to this patient population.
New Episode Highlights the Social and Emotional Impact of Netherton Syndrome, the Importance of Supportive Communities, and the Urgent Need for an Approved Treatment
ASHBURN, Va., Sept. 09, 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 release of the fifth episode in its NETHERTON NOW video series. This installment features twin sisters Allie and Kaleigh Fasanella, both living with Netherton Syndrome, as they candidly share their lifelong struggles of managing this devastating disease.
Diagnosed within their first year of life, Allie and Kaleigh describe how this rare genetic skin disease has shaped their daily routines, their childhood and their mental health. From the constant, painful flare-ups that randomly occur to the emotional challenges of missed school, social events and even weddings, the sisters emphasize the unpredictable nature of the disease and the lasting toll it has taken on their lives.
“Having Netherton has affected my mental health profoundly,” Allie explains in the video, describing the relentless cycle of pain, flares and uncertainty that makes everyday life difficult to plan. She adds, “If a cure landed in my lap, it would be life-changing.”
Kaleigh continues, “We’ve had times where we’re just depressed. We don’t want to do anything. It’s really impacting who we are as people. My advice to people with Netherton is to be as kind and gentle with yourself as possible—and find joy in the daily little things.”
Beyond their shared experiences as patients, both women have built successful careers in digital media. Kaleigh is a freelance writer and editor with over ten years of experience at outlets such as Allure, Teen Vogue, Bustle and Yahoo, where she covers beauty, wellness and lifestyle topics. Allie is also an accomplished freelance writer whose work has appeared in Cosmopolitan, Allure, Teen Vogue, NYLON and Footwear News, with expertise in fashion, beauty and branded editorial. Their professional storytelling experience brings a unique lens to the conversation, helping them articulate not only the physical realities of Netherton Syndrome but also the social and emotional challenges patients face.
“It’s such a huge part of our identities at this point,” says Kaleigh. “We really relied on each other for support and commiseration. At the end of the day, it’s just one foot in front of the other, and remembering that you’re more than your skin.”
Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals, commented: “Allie and Kaleigh’s story highlights not only the physical and emotional toll of Netherton Syndrome, but also the social impact that comes with living with such a devastating and misunderstood disease. The symptoms of Netherton Syndrome can be completely overwhelming to patients. The unpredictability of flares and what causes them, dealing with the ever-present potential for infection that could land you in the hospital, living in constant pain and not being able to sleep undisturbed makes many of these patients constantly dread what could possibly come next and makes it impossible for them to plan for any sense of normalcy. By sharing their voices, Allie and Kaleigh are helping to build awareness of the challenges patients and families living with Netherton Syndrome face on a daily basis. We are deeply grateful to them for their openness and strength.”
“This fifth episode once again reinforces the unforgiving nature of Netherton Syndrome and the immense challenges it imposes on patients and families—not just physically but socially and emotionally,” said Dr. Michael Myers, Co-Founder and Chief Executive Officer of Quoin Pharmaceuticals. “We started the Netherton NOW campaign just over six months ago with the goal of increasing the awareness of this devastating disease. We are humbled and extremely grateful for the highly positive reaction it has generated to date.”
The release of this fifth video in the series comes as Quoin advances its lead product candidate, QRX003, in pivotal clinical trials for the treatment of Netherton Syndrome. Early data have shown encouraging improvements in key clinical outcomes, reinforcing Quoin’s commitment to bringing the first approved therapy to patients and families living with this devastating condition.
The full video featuring Allie and Kaleigh Fasanella is available here: https://www.youtube.com/watch?v=JRvibiNnpTc
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. QRX003 is designed to be applied twice-daily to the entire skin surface, apart from the scalp. For more information about Quoin’s current clinical trials, visit: https://quoinpharma.com/pipeline/#trials. If you have Netherton Syndrome and are interested in participating in one of our clinical trials, please visit: [Link to survey Monkey]
About Quoin Pharmaceuticals Ltd.
Quoin Pharmaceuticals Ltd. is a late 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, SAM Syndrome, Palmoplantar Keratoderma, Scleroderma, Microcystic Lymphatic Malformations, Venous Malformations, Angiofibroma 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 descriptions 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,” “hope,” “plan,” “potential,” “anticipate,” “look forward,” “believe,” “may,” 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: building awareness of the challenges patients and families living with Netherton Syndrome face on a daily basis, advancing QRX003 in pivotal clinical trials for the treatment of Netherton Syndrome, bringing the first approved therapy to patients and families living with this devastating condition. 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, SAM Syndrome, Palmoplantar Keratoderma, Scleroderma, Microcystic Lymphatic Malformations, Venous Malformations, Angiofibroma 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 ability to pursue its regulatory strategy; the Company’s ability to obtain regulatory approvals for the commercialization of product candidates or to comply with ongoing regulatory requirements; the Company’s ability to complete clinical trials on time and on budget and achieve desired results and benefits as expected; and other factors discussed in the Company’s Annual Report on Form 10-K for the year ended December 31, 2024 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 Contact:
PCG Advisory
Jeff Ramson
jramson@pcgadvisory.com
(646) 863-6341
FAQ
What is the current status of Quoin Pharmaceuticals' (QNRX) treatment for Netherton Syndrome?
Who are the featured patients in Quoin Pharmaceuticals' fifth NETHERTON NOW video?
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How is Quoin Pharmaceuticals raising awareness about Netherton Syndrome?
