Niemann-Pick Disease Group charity video GSK IMPACT Awards 2011
The Niemann-Pick Disease Group (UK) has taken the lead, both nationally and internationally, in working on this life-limiting disease.
The charity supports families affected by the various forms of the illness through care, information and research. It provides a 24 hour help line, and jointly funds a clinical nurse specialist based at Manchester Royal children's hospital who provides counselling, clinics and advocacy services for children and their parents.
It has recently piloted the use of video cameras and web cams in the homes of patients so parents can send video clips of their children from which health professionals can decide on the appropriate course of action - from reassurance over the Internet to referral to a specialist centre.