Welcome to the Niemann-Pick Disease Group (UK)

Care & Support

Families affected by Niemann-Pick Diseases (NPD) will require different levels of assistance depending on the type of Niemann-Pick Disease and on the specific circumstances of each individual and family. Assistance from the state and local the local authority can be obtained but it is not always obvious or easy to access. It will depend on the age of the person affected by Niemann-Pick Disease and, unfortunately, the area of the country in which you live. The quality of service provision is highly variable, as is the availability of funding.

The Niemann-Pick Disease Group (UK) can assist in the provision of information and obtaining the appropriate support for families. In this section of our website we aim to provide an insight and some guidance to the types of services, support and benefits that may be available to those who are affected by Niemann-Pick Disease.

Topics in this section:

Genetic Counselling Genetic counselling can help people affected by Niemann-Pick disease to understand the nature of the disease and the effect it will have on their lives. People seeking this type of counselling may be newly diagnosed patients, couples planning a pregnancy, new parents or extended family members concerned that they too may be a carrier of the disease........Read more

What is Transition?Transition takes place between the ages of 14-25, and is the time when young people have to make important decisions about their future. Like all teenagers and young adults, those with disabilities will inevitably experience the ups and downs of adolescence; however these experiences may be more problematic than their non-disabled peers, due to additional health problems and the fact that they are often involved with a number of additional support agencies........Read more

Niemann-Pick Clinic Days Dr Ed Wraith is a Consultant Paediatrician with a special interest in metabolic disease, based at Royal Manchester Children’s Hospital. He is also Medical Advisor to the Niemann-Pick Disease Group (UK) and The Mucopolysaccharide Society. He has extensive experience in caring for patients with lysosomal storage disorders and has written over 200 articles, abstracts, and book chapters on topics related to inborn errors of the metabolism. ...Read more

Jackie Imrie - Clinical Nurse Specialist

jackie photo In 1999 Jackie became the first support nurse for families with Niemann-Pick disease. Having set up the national database and help line, she supports families throughout the country with this group of rare disorders.