Our network of Contact Families can provide practical non-medical information, and will understand the demands of the condition on patients, families and other carers. If asked to do so, they can put people in touch with other affected families and individuals in the area. By using our search tool below you will be able to locate our network of families. For information about regional meetings, click on 'Get involved' on the menu bar.
Locate a family by entering details below, or by clicking on a red point on the map: