Ichthyosis Support Group (ISG)

Ichthyosis Support Group (ISG)

Charity information

Ichthyosis Support Group (ISG)

Ichthyosis is a rare genetic condition predominantly affecting the skin. It affects as few as 1 in 300,000 depending on the type of ichthyosis, of which there are many. It is a lifelong condition which usually presents at birth and can be fatal.
The Ichthyosis Support Group (ISG) is a small user led charity, currently run predominantly by volunteers from affected families, to provide support to all affected by ichthyosis and to raise awareness of the condition and the group amongst healthcare professionals and the wider community.
The ISG provide support by holding yearly events such as national conferences and fun days and encouraging members to get involved in local events throughout the country. The ISG provides information to members through extensive literature and a newsletter distributed 3 times a year. The ISG also has the support of a Medical Advisory Board (MAB) to assist with any medical issues and information into current research. The national telephone line is there to assist anyone needing support or information relating to ichthyosis.
Charity Registration Number 1142457

Founded 1997

  • Mission statement

    “The ISG is committed to the ongoing provision of an information network and support structure for sufferers and families affected by ichthyosis. Associated with that we need to create a greater awareness and understanding within the medical profession, and lobby for greater research into this distressing condition. ” – ISG Vision

  • Aims

    Ichthyosis Support Group (ISG) aims to:

    • To preserve and protect the health of and to relieve persons affected by ichthyosis and any associated condition.
    • To promote research into the management of ichthyosis and to publish the useful results thereof, and to support organisations promoting research into ichthyosis.
    • To advance the education of the medical profession and the general public on the subject of ichthyosis and its implications for the family.
  • Overview

    Established: June 1997

    Registered Charity Number: 1142457

    Board members: 9

    Part time staff: 1

    Volunteers: 10

    Phone number: 08456029202

    Address: PO Box 1404 Bagshot GU22 2LS

    View charity accounts on the Charity Commission website