“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
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.
- 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.
What do we do for our members?
- Provide an information pack containing condition specific leaflets, and further information about the various associated aspects of living with ichthyosis.
- Distribute regular newsletters and E Bulletins.
- Seek advice from our Medical Advisory Board (MAB) which is comprised of some of the UK’s leading Professors, Dermatologists and Specialist nurses.
- We have a network of Regional Contacts who will keep in touch with and organise local events with members in their areas.
- National Conference. The conference is fully supported and attended by our Medical Advisory Board. The weekend event consists of lectures, seminars, workshops and a wonderful opportunity to talk to fellow members and the medical professionals. Children have a great time either on a fully organised trip or onsite in a supervised environment.
- Funday. The Funday is usually held at an exciting venue and is a fairly relaxed day. It is mainly an opportunity to meet and chat informally with other ISG members, sharing stories, experiences and your own knowledge of living with ichthyosis whilst having a great family day out.
- We attend and speak at various dermatology related conferences and events around the UK and Ireland to help raise awareness of the ichthyosis family of conditions.We also attend the annual British Association of Dermatologists (BAD) Conference one of the largest gatherings of Consultant Dermatologists in the UK, to help raise the profile of the ichthyoses and the Ichthyosis Support Group.
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.