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

Educational Health and Care Plan Discussion and Q&A

Do you have questions about EHCPs? Register and join us online.
Members Events 2024

Put these dates in your calendar to join our member events in 2024
Positive Data Revealed in Quoin Pharma's Netherton Syndrome Study

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).
Dr Fiona Browne

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