Hold a fundraising tea party or bake sale to enable further research into ichthyosis, and help us continue supporting families and individuals affected by ichthyosis. Read more
Place your order now. -Luke and the tiger is an inspirational storybook about a boy with ichthyosis for children aged 3-7 years. On his adventure Luke realises he is not the only one with a special skin. Read more
Participants wanted to take part in an online survey for caregivers of children affected with ichthyosis Read more
Come together virtually for our ‘Seasonal Winter Get Together’. A fun filled evening of entertainment including talent competition, fancy dress and quiz. Read more
Listen to this podcast recorded with the BDNG. We talk about ichthyosis and the Ichthyosis Support Group. Read more
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We are returning to Scotland to share expert knowledge and connect the ichthyosis community. This event is a rare opportunity to access valuable information and support. Don't miss out! Read more
Put these dates in your calendar to join our member events in 2024 Read more
Meet Joanna and Charlie and find out about how they navigate life with X-linked ichthyosis Read more
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Both the ISG and the BSF are committed to supporting the research community in their efforts to gain a better understanding of ichthyosis, we expect the ISG/BSF Small Grant to be awarded in June 2023. Read more
WaterSure is a scheme which helps people on specific benefits on a water meter (or waiting for one to be installed) with their water bills. Read more
May is Ichthyosis Awareness Month! Colour Theo in to raise awareness and display him in your windows. Read more
Amanda talks in depth about living with Epidermolytic ichthyosis. Read more
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). Read more
Your feedback is needed! Please complete an online questionnaire which aims to measure the level of patient satisfaction after consultation in an ERN-Skin centre, in order to improve their quality of care and performance. Read more
The residential activity camps are designed to be exciting and fun whilst encouraging social interaction and promoting personal development for children affected by ichthtyosis aged 8-16 years. Read more
Quoin Pharmaceuticals Ltd. is a clinical stage specialty pharmaceutical company. QRX003 is currently being tested in two separate clinical trials Read more
Online Q & A with: Dr Mark O’Sullivan – podiatrist, working at Birmingham’s Children’s Hospital and Paediatric Clinical Nurse Specialist in Dermatology - Sheila Richards, Birmingham’s Children’s Hospital. Read more
3 stories of living with ichthyosis. Talking openly can provide comfort to others, and help raise awareness Read more
ISG Member Rachael, has Congenital Ichthyosiform Erythroderma and is a poet. She has written a Sonnet for Rare Disease Day. Read more
A downloadable card to help support you and the medical professionals who care for you during non related dermatology appointments. Read more
Watch this online webinar with Professor Edel O'Toole and researcher Dr William Davies discussing ichthyosis and answering viewers questions. Read more
There is no reason to suspect that just having ichthyosis puts you at greater risk of catching COVID-19. Please read our full advice. Read more