Did you know?
1 in every 200,000 people live with Netherton Syndrome (NS).
Netherton Syndrome patients don’t know what it’s like to have normally functioning skin. Instead, they suffer from excess skin shedding, red, scaly skin that can lead to painful itching, severe infections that can potentially lead to hospitalization, asthma, allergies, and possibly skin cancer. NS patients are susceptible to transepithelial water loss, or TEWL, and will always be at risk of dehydration. Because of this severe dehydration, infants can often suffer from a failure to thrive. In fact, 10-20% of NS babies will not survive.
Netherton Syndrome patients are aware of their skin disease every moment of every day.
What is NETHERTON NOW?
NETHERTON NOW is a Quoin Pharmaceuticals initiative to increase awareness of Netherton Syndrome, a devastating genetic disease for which there is no cure and no approved treatment. The Netherton community has been overlooked and neglected for far too long and has suffered whilst dealing with the effects of this terrible disease.
This is the time to bring this disease out in the open.
This is the time for NETHERTON NOW. Because everyone deserves to feel comfortable in their own skin.
WHY NOW?
The Netherton Syndrome community has been neglected for far too long.
This rare and devastating condition affects every aspect of life for those it touches. With no cure and no approved treatments, the need for progress has never been more urgent. It is time to bring hope where there is currently none.
NETHERTON NOW is dedicated to raising awareness about NS through advocacy, education, compassion, and research. We hope to provide the support that NS patients and families urgently need and greatly deserve.
What is Netherton Syndrome?
Netherton Syndrome is a rare and severe genetic condition caused by mutations in the SPINK5 gene, leading to defects in the skin’s natural barrier.
Advancing Research
Quoin Pharmaceuticals is committed to the community and is advancing an investigational topical treatment for Netherton Syndrome in four on-going clinical studies.