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.

Published:

Author: Liz Dale

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!

Published:

Author:

Target amount: £2,147,483,647.00

Amount raised: £819.98

Fundraise

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.

Published:

Author: Mandy Aldwin-Easton

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

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New stories

  • Easyfundraising

    Did you know that whenever you buy anything online – from your weekly shop to your annual holiday – you could be raising free donations for Ichthyosis Support Group with Easyfundraising? Read more

  • Psychosocial support research

    If your child has been diagnosed with a skin condition, then you are invited to take part in a research study exploring the experiences of psychosocial support for children and their carers. Read more

  • A Needs Assessment Tool for Caregivers of Children with Ichthyosis

    Carleen Walsh, PhD Researcher invites caregivers of children affected by ichthyosis to test a new needs assessment e-tool to make sure it is reliable and valid. Read more

  • Pre-order Luke and the tiger storybook

    Luke and the tiger is an inspirational storybook about a boy with ichthyosis for children aged 3-7 years. Luke wakes up in the middle of the night, because there is a tiger next to his bed, who asks for help. During their adventure, they meet other wild animals and discover that Luke is not the only one with a special skin. Read more