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Where we work

Ichthyosis Support Group has been working hard since 1997 to make life better for its members and everyone affected by ichthyosis. Our charity is passionate and determined to improve the quality of life for people who have to cope with this very difficult and debilitating long-term health condition. It is incredibly tough on both the person with ichthyosis, especially children, and their families.

We provide an extensive range of ichthyosis information and advice, services and resources, which we distribute across our various communication channels and networks. We also work hard to give a voice for people with ichthyosis, raising awareness of the condition, support research into new treatments and campaign for better medical care.

Here are some highlights of what we do to make a difference:

  • We provide reliable, evidence-based information and advice through our website, social media channels, publications and Newsletters.
  • We offer support and information to individuals, families, medical professionals and schools.
  • We offer individualised advice through our Helpline.
  • We raise awareness of ichthyosis and work with key health officials on strategic issues.
  • We work closely relevant medics, phamaceutical companies and umbrella organisations.
  • We campaign for better medical care for people with ichthyosis.
  • We promote and contribute to research relating to ichthyosis.
  • We work with other ichthyosis patient groups around the world.

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Published: 22nd October, 2019

Updated: 29th January, 2026

Author:

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https://www.ichthyosis.org.uk/where-we-work
Where we work

Latest

  • Faces of Ichthyosis: Anna

    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

    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: Nelly

    Faces of Ichthyosis: Nelly

    Nelly’s story is one of independence, honesty, and positivity - showing that with determination and support, life can be lived fully and on your own terms.

  • Faces of Ichthyosis: Daniel

    Faces of Ichthyosis: Daniel

    Daniel’s story is one of honesty, resilience, and adaptability - showing that even when something is constant and challenging, it’s still possible to find ways to cope, connect, and keep going.

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  • Treatments Used in Ichthyosis

  • Palmoplantar Keratoderma (PPK)

  • X-linked Ichthyosis

  • Vitamin D

    Vitamin D

    Vitamin D is a vitamin which is essential for our health and well-being. Individuals with ichthyosis, in particular ARCI, including CIE/lamellar/harlequin ichthyosis, and epidermolytic ichthyosis, are at risk of Vitamin D deficiency.

  • Harlequin Ichthyosis

  • Inheritance of Ichthyosis Factsheet

  • Ichthyosis Overview

  • Eye Management in Ichthyosis

  • Udrate Cream

    We have received information about a new product similar to the discontinued Calmurid, and the following is for your information and guidance.

  • New product - Udrate

    New product - Udrate

    Following the discontinuation of Calmurid, Udrate is the new product available containing Urea and Lactic acid.

Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?

Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?

This article explains the recent changes in how we name some inherited skin conditions. This includes conditions like the ichthyoses and palmoplantar keratodermas. Read more

Published: 3rd September, 2025

Updated: 4th October, 2025

Author: Mandy Aldwin

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Ichthyosis Support Group, First Floor Rubra One, Mulberry Business Park, Fishponds Road, Wokingham RG41 2GY UK

+44 (0)800 3689621
[email protected]

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© Copyright 2015 Ichthyosis Support Group (ISG) Registered Charity Number: 1142457
Ichthyosis Support Group is a company limited by guarantee | Registered in England and Wales | Company registration number 7609904

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