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.

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 9 Trustees and a paid part-time Office Manager.

The ISG currently has over 1400 members.