The Group is a parent support group founded in 1999 by the parents of affected children. There is currently no formal membership arrangements. The following are offered

• Support by telephone, letter and e-mail
• Information on the condition
• Linking families

We are currently linked to families throughout the UK, Republic of Ireland, Denmark, New Zealand and the rest of the world. It is hoped that the presence of a recently established website will increase awareness within the Medical Profession and provide information for families who have children with this rare condition.