Partner – Ichthyosis Support Group
Find out about how Ichthyosis Support Group supports dermatology education below.
Ichthyosis Support Group
The Ichthyosis Support Group (ISG) was formed in 1997 by a group of people affected in some way by ichthyosis, some of whom have ichthyosis, and others who care for someone who does.
The group exists with one part time employee, through fundraising and a great deal of voluntary work. The ISG helps all those affected by the condition in the UK and Ireland, providing support to individuals and families as well as less knowledgeable professionals. The ISG is supported by a Medical Advisory Board consisting of relevant experts in the field of ichthyosis and related specialties.
The way in which the ISG provides this support is extensive including a freephone national helpline which is often the first point of contact for people with the ISG. This is an invaluable service as there is a knowledgeable and experienced person answering the call to offer support and empathy to a caller who may have little or no experience or knowledge about such a rare condition.
The ISG provides support through educational family conferences, family days and children's camps. All these events enable individuals and families to come together, share experiences and feel more at ease with the way they look, which can often be difficult in society, particularly for younger members whilst growing up. These events help with self-esteem and personal development and often help individuals to develop coping strategies when dealing with negative comments from individuals with no knowledge or understanding of such a condition.
The ISG also provides information and education through relevant literature and online discussion sessions to people affected by the condition as well as health professionals such as GP’s and surgeries who may be involved in the individuals care. Raising awareness amongst the general population and health professionals is of paramount importance to the health and well- being of sufferers and their families and the ISG consider this aspect of the charity of great importance.
A regular newsletter, the website and social media keep members informed of the activities of the group, its membership and what’s happening in the world of dermatology.
The ISG provides grants for ichthyosis research, and other relevant research projects, with the aim of making an annual grant, and for the size of the grant to grow in line with income.
The ISG works collaboratively with other organisations such as the British Association of Dermatologists, British Dermatological Nursing Group, British Skin Foundation, Changing Faces, Genetic Alliance and Rare Disease UK.