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About us

We are a support group that was originally started in the United States. In November 2001 a group of individuals with the condition set up this UK Internet based support group to help those with the disease by offering a database of practical information as well as a message board.

It is hoped that this support group will enable those with the disease to discuss with others their experiences and exchange information of value in order to find answers to their concerns.

We operate entirely on a voluntary basis. We have no source of income and the group is run by people with the condition for the benefit of those who have the condition.