Put these dates in your calendar to join our member events in 2024 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
Amanda talks in depth about living with Epidermolytic ichthyosis. Read more
3 stories of living with ichthyosis. Talking openly can provide comfort to others, and help raise awareness Read more
There is no cure for ichthyosis, but it can be treated and managed.
There are many types of ichthyosis and each type is unique to each individual and depending on the type, may be inherited differently.
Set up a fundraising page on the ISG website. Using our online form will be the easiest way to get sponsorship from far and wide and the collecting is done for you – so no chasing up sponsors!
Some of our members have generously shared their personal stories of living with ichthyosis. These stories feature many types of ichthyosis from a wide range of people.
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. Read more
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? Read more
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
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. Read more