Amanda's story

Watch Amanda's story

Latest

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

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).
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.
ISG Video Project

We have been awarded funding by the British Association of Dermatologists (BAD), to produce a series of videos portraying life with ichthyosis from the perspective of various types, ages, gender and ethnicity. Would you like to feature as one of our stories?
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.
Youth Forum - British Society of Paediatric and Adolescent Dermatology (BSPAD)

Are you aged 16-25? Are you living with a skin or hair condition? The BSPAD would like to include the voices and priorities of young people in their work.
Recording of Epidermolytic ichthyosis (EI, EHK, KPI, BIE) Presentation and Q&A

The recording of the online Presentation and Q&A session.
Publish a patient perspective article for the BJD

The British Journal of Dermatology (BJD) are looking for articles written by dermatology patients (can be co-authored with a clinician), carers, and patient societies.
Carleen Walsh, ISG Mum, Awarded PhD for Ichthyosis Research

ISG Mum and researcher Carleen Walsh has been awarded a PhD doctorate in August 2022 for her research into the impact and implications of caring for a child living with ichthyosis.