Our History

The Ichthyosis Support Group (ISG) was formed in 1997 by a group of individuals affected by ichthyosis to create a network of parents, sufferers and medics, and became a UK registered charity in 2001. In 2011 the ISG became a company limited by guarantee, registered in England and Wales, company registration number 7609904 and new registered charity number 1142457 (formerly 1084783).

The Executive committee who run the ISG is comprised of ichthyosis sufferers and relatives of sufferers, all of whom give their time voluntarily. In recent years, volunteers on the board have extended to include individuals who are aware of ichthyosis but not necessarily directly affected.  The committee presently consists of 8 trustees and a paid part time administrator.

The ISG currently has over 600 members.

Our Vision

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

Our Aims

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

The ISG provides:

  • Information and advice about living with ichthyosis
  • Regular contact to keep you up to date
  • Advice from our Medical Advisory Board
  • Links to a Support Team
  • Access to our annual event – bringing families together
    to share experiences and to learn about living with
  • Summer camps for children

What does the ISG do:

  • Lobby for greater research into ichthyosis
  • Raise awareness of ichthyosis and promote greater
    understanding within the medical profession
  • Support research
  • Share information within the European Network for


The decision of taking on an employee was a huge step for the ISG and had been debated by the trustees for a long time. As the numbers of members’ increase and the charity grows, the more work it generates, and being run solely by volunteers means that in the past some projects have been delayed.
So the decision was made to apply for a grant from the British Association of Dermatologists to cover the cost of setting up a home-office and the first 6 months salary for a part-time administrator. We were delighted to be successful with our application and Liz Dale started her employment with the ISG in August 2009.


The Ichthyosis Support Group is unable to answer questions of a specific medical nature. We are not qualified to respond to such enquiries and would advise you to seek professional medical assistance.
The ISG leaflet can be previewed and downloaded here.