My Story Ichthyosis Booklet

To find out more about the ISG or become a member please get in touch in one of the following ways:

By Phone

0800 368 9621

By Email:

[email protected]

Facebook:

facebook.com/ichthyosissupportgroup

Twitter:

twitter.com/ISG_Charity

Latest

Gordon is running 'The Wall' Ultramarathon

I'm setting myself a challenge to run this classic 70 mile ultramarathon which follows the route of Hadrian's Wall from Carlisle to Newcastle on June 14th 2025 to raise money for the Ichthyosis Support Group.

The Ichthyosis Support Group helps families and individuals living with a form of ichthyosis, a rare genetic skin condition.
Mandy wins Dermatology Award

Mandy has won the Quality in Care Programme People’s Award for Dermatology Award
Ichthyosis Event for Individuals and Families - Ireland

We’re excited to return to Ireland to share expert insights and bring the ichthyosis community together. This event is a unique chance to gain valuable knowledge and support. Don’t miss this opportunity—join us!
Halloween trek

Join #TeamISG and raise as much as we can together - you'll still have your own personal total!

Managing Ichthyosis at Pre-School and Primary School Guide

Revised guide available now!
Amanda's story

Amanda talks in depth about living with Epidermolytic ichthyosis.
Living with ichthyosis

3 stories of living with ichthyosis. Talking openly can provide comfort to others, and help raise awareness
Order Luke and the tiger storybook

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.
Summary of Ear Care in Ichthyosis Discussion Sessions

On Saturday 27th March 2021 members joined us on Zoom for 2 1 hour discussion sessions about Ear Care in Ichthyosis, held at 10.00am and 5.00pm. Independent ENT Nurse Practitioner, Jo Outhwaite, (previously from Birmingham Children’s Hospital) shared her expertise on ear care.
WaterSure Scheme

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.
Childrens Questions
Guide for Carers and Teachers
True Blue Hand Story
ISG Pre and Primary Schools Pack