Researchers are looking for mothers/daughters of individuals with X-linked ichthyosis who have suffered mental health problems after giving birth. Click here for more information.
Please write to us with your story (500 words approx) of living with ichthyosis, include a photo if you’d like to! Email it to us, send it via our contact form or send it in the post. It may be featured in the newsletter and on the website.
Participants (aged between 6-30 years) needed for research to investigate physical development in X-linked ichthyosis sufferers. Click here to find out more.
Click here to find out who is fundraising for the ISG!
Below are links to articles that have appeared in newspapers and magazines.
Climbing Mountains For Ichthyosis
Mum sheds stone of SKIN a year!
Mum sheds almost 2st of skin a year
Sisters shed their skin every day in condition that causes it to grow six times faster than normal – Daily Mail February 2012
Mum Speaks Out Over Son’s Rare Skin Condition – This is Local London
Hitchin Grandmother’s push for rare skin condition – The Commet 24
Leeds tot’s rare skin torment – Yorkshire Evening Post
Annabelle Whitehouse sheds her skin 14 times a day – Daily Mail Online
A Sutton girl who suffers from a rare and incurable skin condition is helping to raise awareness of – Sutton Coldfield Observer
Pride of Northamptonshire nomination – EveningTelegraph
100 people sign up in support of baby – Northants Evening Telegraph
Southport man will cycle 2000 miles for charity – Southport Visiter
Mother’s buggy walk in memory of little Freddie – Northants Evening Telegraph
Conor’s brave battle with skin disease – Enniscorthy Echo
Brave Ellie’s Fight – The Shields Gazette
Father-in-law saves Melanie’s charity walk 2010 - This is Lancashire
Five miracle kids and their struggle to get to their first day of school- The Daily Mirror 2009
Raising Awareness of Skin Conditions – Camberley News & Mail 2009
Highlighting Rare Condition – Hampshire Star Courier
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