Niemann-Pick Disease Group (UK)
The Niemann-Pick Disease Group (UK)is an international, self-help support group which was granted charitable status in 1997. The Group aims to support families of children and young people affected by all types of Niemann-Pick Disease. Through the Group we aim to
- give and receive emotional support
- provide assistance through a crisis
- share resources and ideas about such issues as doctors, clinics, benefits and education
- provide each other with practical suggestions relating to the day to day care of our children
- establish enduring relationships with others who, on a personal level, understand the anguish the joys and the recovery of being a parent of a child with a life-limiting condition. If you would like more information please contact us, we are here to help.