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 fundraising and voluntary work to enable the group to continue.  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 national helpline which is usually the first point of contact for people with the ISG and this may be provided to parents, 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 sufferers and carers through educational conferences and family days and 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 sufferers 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, initially £5000 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).

Feedback Quotes

“We met new families with the same condition and a great day out, it was very well done, cannot ask for more”

“it has been good talking to other families and knowing we are not alone”

“Bad skin can be fun at least for a day”

“To see children happy and smiling and the parents united is wonderful”

“He has come back so much more confident and says it’s nice to feel like you fit in”

“I enjoyed making new friends affected by ichthyosis because we shared experiences”

 “Making new friends at the camp was important to me because I can now keep in touch with other people that have ichthyosis” 

“I feel this is an excellent way of letting children with ichthyosis see how far they can push themselves…it proves to them the condition doesn’t have to limit them”

“I thoroughly enjoyed the camp…It is so good that the weekend was such a success for the children”

“Seeing the children interact, try new activities and confide in one another was fantastic.  All the children were affected by ichthyosis but at different levels yet the camp suited all of them.  Seeing the difference just a  few days together made to each and every one of the children was truly inspirational”

“Would just like to say thank you so much to everyone who organised the summer camp at Surrey.  K has said he has had a brilliant time and he loved every minute of it. I am so grateful that  you have put something like this on for the children. It really is a great opportunity for them to meet other sufferers and realise they are not alone in this.  A massive thank you to all involved.”

“We wanted to say a big THANK YOU to you and everyone else at ISG and your supporters for R place at camp.  She had a fabulous time and felt it really helped with her confidence. She made some good friends and wants to thank you both for making her feel so welcome and for your infectious enthusiasm :) She is already looking forward to seeing everyone next year!”