The first meeting of the group took place in Manchester in 1992, with five patients and their families in attendance.

Over the years numbers have increased dramatically, mainly due to the accessibility of the internet and the links we have forged with healthcare practitioners within the NHS. We are now in contact with almost 900 individuals and their families  via various social media platforms.  Many more people from countries across the world also look to us for information about the many aspects of the condition.

Official Charity Status was granted in March 2003.

We are supported by a team of Medical Advisors comprising healthcare professionals from across a range of disciplines. We are grateful for their continuing support.

Reviewed: 21/01/2019