Member stories

Here are some personal stories from our members

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Members Events 2024

Put these dates in your calendar to join our member events in 2024
Positive Data Revealed in Quoin Pharma's Netherton Syndrome Study

Quoin, a specialty pharmaceutical company focused on rare and orphan diseases, announces additional positive clinical data from its ongoing open-label study evaluating the safety and efficacy of QRX003 as a potential treatment for Netherton Syndrome (NS).
Dr Fiona Browne
Polly Buchanan - Dermatology Nurse

Amanda's story

Amanda talks in depth about living with Epidermolytic ichthyosis.
Living with ichthyosis

3 stories of living with ichthyosis. Talking openly can provide comfort to others, and help raise awareness
Amber

My name is Amber Brine and I live in Townsville, Queensland, Australia. I was born with Netherton Syndrome which is a form of ichthyosis.
A Poem for Rare Disease Day by ISG Member and poet Rachael Boast

ISG Member Rachael, has Congenital Ichthyosiform Erythroderma and is a poet. She has written a Sonnet for Rare Disease Day.
Paige

My name is Paige and I am 20 years old. This is my story. Ever since I was born the doctors were adamant that I had severe eczema despite my bright red blistering dry skin.
Chantell and Andrew

My name is Chantell. I live in a small community in Fort Nelson B.C, not a very big town for sure but the people are friendly and we call it our home.
Kevin

I have just been diagnosed as having Ichythyosis X-Linked in the last few weeks. I am 46 years old man and have suffered since birth on my legs, arms and trunk.
Helen

I am now 51 years old….just. I have had ichthyosis all my life. It is part of me and I live with it. It makes me unique. Sometimes it frightens me, because I and others do not know it is going...
Mai

My name is Mai, I’m a 20-year-old student with many dreams and ambitions. As other sufferers of ichthyosis, I had been going through both physically and mentally difficulties.
Max

Our son was born 2 years ago with harlequin ichthyosis. We were told he would not live, we were shocked, devastated, free falling with fear, desperation, confusion.