Welcome to the Niemann-Pick Disease Group (UK)

Practical Advice

The age of onset and rate of progression of Niemann-Pick disease is highly variable. Affected families 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 the local authority can be obtained, but it is not always obvious or easy to access. The quality of service provision is highly variable, as is the availability of funding and will depend on the age of the person affected by the disease. Having a diagnosis is seen as essential and provides the label necessary for so many application forms and assessments procedures.

The Niemann-Pick Disease Group (UK) can provide guidance to the types of services, support and benefits that may be available to those who are affected by Niemann-Pick disease and can assist families in obtaining the level of support appropriate to them.

Aids and Adaptations

Equipment and Technology

The Benefits of a Key Worker

Useful Publications

Every Disabled Child Matters (EDCM) is the campaign to get rights and justice for every disabled child.

EDCM is a consortium campaign run by four of the leading organisations working with disabled children and their families: Contact a Family, the Council for Disabled Children, Mencap and the Special Educational Consortium. Between them, the campaign partners represent over 770,000 disabled children and young people in the UK.

Click here for more information on the Campaign.

Independent Parental Special Needs Advice

(IPSEA) is a voice for children with special educational needs. They are an independent charity, started 25 years ago, to help parents to get the special education that their children need. Click here for more information.