The association is a small charity run by volunteers who give their time freely. It is funded solely by donations with no paid officials.
The association is the inspiration of our founder Anne Klepacz who back in 1991 realised that there was very little information available for patients either from clinicians or other people with similar conditions.
If you are interested in helping with the work of the Group, please let us know. You can telephone Anne on 020-8993 4759 or e-mail her at email@example.com. Should you wish to notify us of any relevant news item that would interest our members or comment on this web site, please email firstname.lastname@example.org
This is a personal video, recorded by our late and much lamented member Andrew MacLean: