When a child or individual is diagnosed with Niemann-Pick disease it adversely affects the whole family. Hopes and dreams for the future are destroyed, leaving families feeling distressed, frightened and isolated.
The path to this diagnosis is often a difficult one, due to the rarity of the condition and the fact that most people, including medical professionals, know little, if anything, about it. Therefore it may at first appear as though there is not an awful lot of understanding, information or support available to affected families.

The Niemann-Pick Disease Group (UK) is a registered charity aiming to make a positive difference to the lives of those affected by Niemann-Pick disease (NPD) and their families, through the provision of care and support, accurate information and the promotion of relevant research. We are committed to relieving sickness and distress amongst such families and, to providing emotional, as well as practical support. Through the development of a strong family support network, we are helping to reduce feelings of isolation and despair.

As a small charity with less than five hundred members, the work we do is funded entirely by membership fees, fund raising activities and successful grant applications. Our strength, therefore, comes from the dedication of our much valued families, members, benefactors and volunteers who work, with tremendous effort and loyalty, in support of the charity.

The Trustees acknowledge the help and support that is given to the charity and ensure that funds are used solely to meet its aims and objectives. They meet each quarter to resolve any strategic or operational issues and to monitor the delivery of support services. The Group also has a number of distinguished Patrons who lend their support to our work.

Medical Adviser to the Group is Dr Ed Wraith, Consultant Paediatrician at the Royal Manchester Children's Hospital.

The Group employs an Executive Director and a Communications Officer, who ensure the smooth running of the organisation from the Central Office in Washington, Tyne and Wear. They provide support and information to families and associated professionals in the form of a 24 hour helpline, educational literature and regular newsletters.

To further support families, the Group fund the salary of a full time Clinical Nurse Specialist for NPD, basedt at Manchester Royal Children’s Hospital, providing expert care and practical advice, plus home visits whenever necessary. Genetic counselling and advocacy services are also provided. The Group are grateful to Children in Need, The Foyle Foundation and The Roald Dahl Foundation, who each provide much needed funds to enable the continuation of this post.

In 2006 the Group employed a Clinical Research Nurse, to enable the collection of much needed data regarding clinical aspects of this group of diseases. The creation of this post, the first of its kind for this group of diseases, has the potential to improve understanding of NPD, stimulate research and assist in therapy development.

Trustees
The Group is managed by the Board of Trustees within the context of an approved Constitution. All Trustees and office bearers are volunteers and are elected at the AGM. The Board meets quarterly, with at least four additional teleconferences, and is responsible for all the activities the Group undertakes. All Trustees have specific responsibilities within the Group to co-ordinate/support particular aspects of work.

If you would like to contact the Trustees, telephone the Central Office on 0191 415 0693 or email