Quoin Pharmaceuticals Launches New Video Series on Netherton Syndrome
Raising Awareness Through the "Living with Netherton" Video Series
Quoin Pharmaceuticals Ltd. (NASDAQ: QNRX) is taking a significant step forward in the fight against Netherton Syndrome with the premiere of its new video series titled "Living with Netherton". This initiative aims to give a voice to families affected by this rare genetic disorder while educating the wider community about its profound impact.
What is Netherton Syndrome?
Netherton Syndrome is a rare genetic disorder caused by mutations in the SPINK5 gene, leading to various distressing symptoms like excessive skin shedding, painful inflammation, and recurrent infections. Patients often experience dehydration and a raised risk of complications including asthma and allergies. Alarmingly, about 20% of infants born with this condition do not survive, highlighting the critical need for enhanced awareness and research.
The Launch of the Video Series
The first episode of the "Living with Netherton" series is set to release on Rare Disease Day. This series is part of a larger campaign named NETHERTON NOW, aimed at illuminating the struggles faced by those living with Netherton Syndrome. Denise Carter, Co-Founder and COO of Quoin Pharmaceuticals, states the series will ensure that no family feels they must navigate this journey alone. By sharing real-life experiences, the series seeks to foster greater understanding and support for affected individuals and families.
Real Stories from Families
The inaugural episode features a heartfelt story from Carmon McTigue, who speaks candidly about her son's journey with Netherton Syndrome. Initially confused by multiple misdiagnoses, Carmon and her husband faced extended periods of uncertainty and anxiety before receiving the correct diagnosis after seven months of perseverance. This personal account underscores the often overwhelming challenges families must overcome while seeking the right care and understanding.
The Commitment of Quoin Pharmaceuticals
Quoin Pharmaceuticals is dedicated to developing effective treatments for rare diseases, with Netherton Syndrome as a primary focus. Their leading candidate, QRX003, is currently undergoing clinical trials and has shown promising potential as a treatment option. The company’s broader mission is to cater to the unmet medical needs of patients and families affected by rare conditions like Netherton Syndrome.
Future Goals for the Series
Future episodes of the "Living with Netherton" series will continue to delve into the experiences of additional patients and families. The overarching goal is to maintain momentum in raising awareness and to advocate for the advancement of treatment options. By providing a platform for these narratives, Quoin hopes to create a supportive and informed community.
Why Netherton Awareness Matters
The struggles faced by those living with Netherton Syndrome extend beyond physical illness; families endure significant emotional and social hardships. Through the NETHERTON NOW campaign, Quoin Pharmaceuticals is committed to shining a light on these issues, encouraging compassion, and understanding of the realities these families face every day. The more awareness is raised, the stronger the call for research and treatment initiatives can become.
Join the Conversation
Quoin's initiatives also include an educational hub available through their NETHERTON NOW website, where patients and families can share stories and access helpful resources about Netherton Syndrome. As the conversation continues, viewers will be able to engage further with the content, share their experiences, and help raise awareness collectively.
Frequently Asked Questions
What is the purpose of the "Living with Netherton" video series?
The purpose of the series is to share patient and family experiences regarding the challenges of living with Netherton Syndrome, with the goal of raising awareness and fostering understanding.
When will the first episode be available?
The first episode is set to premiere on Rare Disease Day, which falls on February 28, 2025.
Why is Netherton Syndrome awareness important?
Awareness is crucial because many families experience long delays in obtaining accurate diagnoses, which can severely impact care options and the quality of life.
What role does Quoin Pharmaceuticals play in Netherton Syndrome treatment?
Quoin Pharmaceuticals focuses on developing innovative treatments specifically for rare diseases like Netherton Syndrome, with their lead drug, QRX003, currently in clinical trials.
How can I learn more about Netherton Syndrome?
For more information, individuals can visit the NETHERTON NOW website for educational resources, patient stories, and updates on research progress.
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