Caring For Ichthyosis
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.
Ichthyosis is a rare skin condition. You are not alone.
We support children, adults and families affected by ichthyosis across the UK, from diagnosis onwards.
Talk to us free: 0800 368 9621
Fundraise for the Ichthyosis Support Group
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!
Meet our members
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.
Make a donation
£10 could fund a call to our freephone helpline for a worried parent.
Donate nowOr give £10 a monthLatest news
Upcoming Member Events in 2026
Upcoming Member Events in 2026
Why Does It Take So Long to See a Dermatologist?
Why Does It Take So Long to See a Dermatologist?
ISG Treasurer Lee Completes Ultra Marathon for Ichthyosis
ISG Treasurer Lee Completes Ultra Marathon for Ichthyosis
Finding Family in the Ichthyosis Support Group
Finding Family in the Ichthyosis Support Group
How Ichthyosis Changes as We Age: Key Takeaways From a New Study
How Ichthyosis Changes as We Age: Key Takeaways From a New Study
Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?
Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?
Ichthyosis and Holidays
Ichthyosis and Holidays
Get involved
Children’s Activity Camps
The residential activity camps are designed to be exciting and fun whilst encouraging social interaction and promoting personal development for children affected by ichthyosis aged 8-16 years.
Upcoming Member Events in 2026
Discover ISG’s 2026 events: Cuppa & Chat mornings, online sessions, regional gatherings, and children’s activity camps. Stay connected and involved!
Fundraising Events
Are you up for the challenge? Whether you run, trek, walk, jump or cycle every step or leap to take will help us give individuals and families the support and resources they deserve.
Raising awareness with Theo
During Ichthyosis Awareness Month, you can help raise understanding and support by bringing Theo, the Ichthyosis Support Group mascot, to life.
Impact of ichthyosis
3
hrs
is the average time people spend a day treating their skin
45
is the collective number of different emollients used by members
97
%
of people stated having ichthyosis affects more than just their skin
Faces of Ichthyosis
“Robyn’s story is one of joy, resilience, and possibility: proof that with the right support, children with ichthyosis can live life boldly.”
