Our impact

The Ichthyosis Support Group (ISG) was set up by people affected in some way by ichthyosis either as a sufferer themselves or carer of someone who suffers with the condition itself.  Currently the group exists through 2 part time employees, a lot of voluntary work and fundraising to enable the group to provide information, resources, and events for those affected by ichthyosis.  The ISG helps all those affected in some way by the condition 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.

The way in which the ISG provides this support is quite extensive. Firstly the ISG has a phone line, which is often the first point of contact for people with the ISG and this may be provided to parents, or individuals for example, at the first dermatology appointment where diagnosis may have been made. 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 also provides the support to individuals and families through family conferences, family days and residential children's camps, enabling and allowing families and those affected, to come together, share experiences and feel at ease with the way they look, which can often be difficult for those living with ichthyosis in society, particularly for younger members whilst growing up. These events help with self-esteem and personal development and often enable 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/education through relevant literature 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 E Bulletin and Newsletter and the website keep the members informed of the activities of the group, its membership and what’s happening in the world of dermatology.  A new tele-conferencing service for sufferers enables people to access direct expert advice specific to their needs.  The recent addition of a private online forum helps people to engage privately and safely.

The ISG has previously provided grants for research into harlequin ichthyosis, lamellar ichthyosis, and Netherton’s Syndrome, as well as others. The aim is to continue to make a research grant available for ichthyosis research, up to £20,000 per annum, and for the size of the grant to grow in line with income.

The ISG works collaboratively with other organisations such as Genetic Alliance, Rare Disease UK.  The ISG is also supported by a number of medical professionals who are experts in ichthyosis (ISG Medical Advisory Board - MAB).

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