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 registered charity number 1142457.

The ISG Board of Trustees who run the ISG is comprised of people directly affected by ichthyosis including individuals and other family members, all of whom give their time voluntarily. The ISG has 2 part-time employees and a Medical Advisory Board (MAB).