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.

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.

• National Family 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.

• Children's Residential Camps.  We run successful annual residential camps for all children affected by ichthyosis providing the much needed social interaction and support for children affected by ichthyosis in some way.

• Family Day.  The Family Day 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 raise awareness of the ichthyoses by attending and speaking at various dermatology related conferences and events around the UK and Ireland. We also attend the British Association of Dermatologists (BAD) Conference one of the largest gatherings of Consultant Dermatologists in the UK, and the British Dermatological Nursing Group (BDNG) Annual Meeting to help raise the profile of the ichthyoses and the Ichthyosis Support Group.

 

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.