We can help with practical advice on how to cope with the disease. Our members are all at varying stages in the development of this disease, and they have immense personal experience of coping on a day-to-day basis.

On this website you will find information about the disease, the treatments available, how to find a consultant to help you, and practical hints on coping with the disease.

Our website is divided into two sections. The public pages contain general information about the condition; however, most of the information is on our members’ pages and can be accessed after joining the group (for which no charge is made).