Welcome to the Niemann-Pick Disease Group (UK)

NPDG (UK) Support Services - An Overview

Rachael and Mum
The main aims and objectives of NPDG (UK) are; to make a positive difference to the lives of those affected by Niemann-Pick diseases (NPD), relieve sickness and any distress which may arise therefrom and, to advance the education and awareness of such families, professionals and the general public in all matters concerning the disease.

The NPDG (UK) aim to provide effective support in the three main areas of care, information and research.

Care and Support

Provision of a 24 hour Helpline – 0191 415 0693
Access to a Clinical Nurse Specialist for NPD, Jackie Imrie, based at Genetic Medicine, St Mary's Hospital in Manchester, providing advice on all aspects of the disease.
Home visits from the Clinical Nurse Specialist as required
Production of a Family Directory, encouraging the creation of family support networks.
Organisation of an Annual Family Conference, providing networking opportunities for families who are geographically widely dispersed.
Organisation of clinic days for children and adults.
Provision of counselling and advocacy services to families.

Information

Provision of information packs
Regular newsletters
Production and distribution of educational literature regarding NPD
Website
Telephone advice from the Clinical Nurse Specialist, Clinical Research Nurse and Executive Director.
Collaboration with other relevant organisations, both nationally and internationally, to encourage the sharing of information and resources between other relevant organisations, both nationally and internationally.
Specialist information is also available for medical and social care professionals.

Research

NPDG (UK) fully funds the post of a part-time Clinical Research Nurse, Elizabeth Jacklin, based at St Mary's Hospital, Manchester, enabling the collection of much needed data regarding clinical aspects of the disease
The Clinical Research Nurse maintains a close liaison with pharmaceutical companies regarding existing and future developments in possible palliative treatments.
The Group provide a Trustee memorial award for scientific submissions by young professionals who are, or will be, working on Niemann-Pick diseases.
The dissemination of current information regarding developments in research to families and other interested parties.

For further information about the services we provide, please contact:

Toni Mathieson, Executive Director on 0191 415 0693 or email niemann-pick@zetnet.co.uk.

Jackie Imrie, Clinical Nurse Specialist for NPD on 0161 701 2414 or by email jacqueline.imrie@cmft.nhs.uk

Elizabeth Jacklin, Clinical Research Nurse for NPD on 0161 701 2967or by email Elizabeth.Jacklin@cmft.nhs.uk