Registered Charity No
The Ichthysis Support Group (ISG) is a small user-led registered charity, currently run predominantly by volunteers from affected families. The ISG provides support to adults, children and their families throughout the UK who are affected by Ichthyosis, as well as raising awareness amongst health professionals and the wider community.
Ichthyosis is a rare and life-long skin condition of which there are many types. It can affect as few as 1:300,000 people in the UK and the impact on their quality of life can be extreme and debilitating. Failure to thrive in earlier years and recurring infection can be an on-going problem for suffers and can be life threatening. Psychologically, this condition can have a hugely negative impact on a person's quality of life. Poor self esteem, lacking in confidence and clinical depression are common amongst those affected.
The ISG provides support by holding annual events such as national educational conferences and family days. The ISG provides information to members and health professionals through extensive literature, a monthly e bulletin and a newsletter distributed 3 times a year. The ISG also has the support of a Medical Advisory Board (MAB) to assist with any medical issues and information into current research. The national telephone line is there to assist anyone needing support or information relating to Ichthyosis.
The ISG is aware of the need to create a better understanding within the medical profession and lobby for greater research into this distressing condition. The ISG is committed to giving an annual grant for research into Ichthyosis.