The Niemann-Pick Disease Group (UK) was a winner in the 2011 GSK IMPACT Awards. The charity supports people directly affected by Niemann-Pick disease, a life-threatening metabolic disease affecting 500 children worldwide.
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.