Faces of Ichthyosis:
Anna

Anna’s story highlights the resilience needed to live with ichthyosis and the daily reality of managing her skin. She hopes people will look beyond appearances and better understand the condition.

Faces of Ichthyosis:
Daniel

Daniel’s story is one of courage, honesty, and self-belief – showing that even in the face of misunderstanding, you can still choose to live life your own way.

Faces of Ichthyosis:
Robyn

Robyn’s story is one of joy, resilience, and possibility – proof that with the right support and a lot of determination, children with ichthyosis can live life boldly and without limits.

Faces of Ichthyosis:
Ibrahim

Ibrahim’s story is one of confidence, family, and quiet determination – showing that with the right support, children with ichthyosis can thrive in their own way.

Committed to the ongoing provision of an information network and support structure for individuals and families affected by ichthyosis

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.

Learn more

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!

Learn more

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.

Learn more

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

Make a donation

£5 £10 £25 Other
Donate

Latest news

Why Does It Take So Long to See a Dermatologist?
Why Does It Take So Long to See a Dermatologist?

Why Does It Take So Long to See a Dermatologist?

A Dermatologist’s Perspective for People and Families Living with Ichthyosis If you or your child has ichthyosis, long waits for dermatology referrals or appointments can…
Upcoming Member Events in 2026
Upcoming Member Events in 2026

Upcoming Member Events in 2026

You must be a member and register in advance to attend any of our events. Dates for all types of events will be announced, so…
ISG Treasurer Lee Completes Ultra Marathon for Ichthyosis
ISG Treasurer Lee Completes Ultra Marathon for Ichthyosis

ISG Treasurer Lee Completes Ultra Marathon for Ichthyosis

We are incredibly proud to share the inspiring journey of Lee, ISG Treasurer, who recently pushed himself to the limit by completing an ultra marathon…
Finding Family in the Ichthyosis Support Group
Finding Family in the Ichthyosis Support Group

Finding Family in the Ichthyosis Support Group

In this film, members of the Ichthyosis Support Group (ISG), alongside medical professionals and researchers, share why the charity is such an important part of…
How Ichthyosis Changes as We Age: Key Takeaways From a New Study
How Ichthyosis Changes as We Age: Key Takeaways From a New Study

How Ichthyosis Changes as We Age: Key Takeaways From a New Study

A recent study published in the Orphanet Journal of Rare Diseases indicates that for adults with congenital ichthyosis, skin severity and its impact on quality…
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 Epidermal Differentiation Disorders: What the New Term Means For You?

A guide to the new ichthyosis and palmoplantar keratoderma naming system - Epidermal Differentiation Disorders (EDDs) This article explains the recent changes in how we…
Ichthyosis and Holidays
Ichthyosis and Holidays

Ichthyosis and Holidays

Written by Cat Lancashire, ISG Ambassador We all know that travelling aboard can be stressful at times but add medical conditions into the mix and…

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.

Faces of Ichthyosis

“Anna’s story highlights the resilience needed to live with ichthyosis and the daily reality of managing her skin. She hopes people will look beyond appearances and better understand the condition.”

AnnaRead Anna’s story

“Daniel’s story is one of courage, honesty, and self-belief - showing that even in the face of misunderstanding, you can still choose to live life your own way.”

DanielRead Daniel’s story

“Robyn’s story is one of joy, resilience, and possibility - proof that with the right support and a lot of determination, children with ichthyosis can live life boldly and without limits.”

RobynRead Robyn’s story

“Ibrahim’s story is one of confidence, family, and quiet determination - showing that with the right support, children with ichthyosis can thrive in their own way.”

IbrahimRead Ibrahim’s story