beyond eczema control long term outcomes of dupilumab therapy in six patients with netherton syndrome

Original title: “Beyond Eczema Control: Long-Term Outcomes of Dupilumab Therapy in Six Patients with Netherton Syndrome.”

dupilumab in paediatric netherton syndrome two case reports and a review of the literature

Original title: “Dupilumab in Paediatric Netherton Syndrome: Two Case Reports and a Review of the Literature.”

in depth human phenotype ontology curation boosts prioritization performance for netherton syndrome

Original title: “In-depth Human Phenotype Ontology Curation Boosts Prioritization Performance for Netherton Syndrome.”

“Nearly 2 million video views ... of the patients and families who chose to share their experiences. Individuals who had previously lived in silence with their suffering at the hands of this disease now have a platform to share their stories, connect with one another, and help bring greater understanding of Netherton Syndrome to the broader medical and advocacy communities. That expanded awareness is exactly what this campaign was meant to create.” · In conjunction with Rare Disease Day, ... “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. Individuals who had previously lived in silence with their suffering at the hands of this disease now have a platform to share their stories, connect with one another, and help bring greater understanding of Netherton Syndrome to the broader medical and advocacy communities. That expanded awareness is exactly what this campaign was meant to create.” · 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. 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, reflecting the positive impact of the campaign’s message to grow awareness of this long-neglected disease. “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. Quoin’s lead investigational candidate, QRX003, is currently being evaluated in late-stage pivotal clinical trials for the treatment of Netherton Syndrome. The Company remains committed to addressing the significant unmet medical needs faced by patients and families impacted by this devastating disease. For more information about Rare Disease Day, visit www.rarediseaseday.org. 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.

Original title: “NETHERTON NOW Recognizes Rare Disease Day and Highlights Growing Global Awareness of Netherton Syndrome - BioSpace”