01709210151 / 07716135940 kerry.leeson@alstrom.org.uk

Address: Suite 2, Vermont House, Concord, Washington, Tyne and Wear, NE37 2SQ
Telephone Number: 0191 415 0693
Email: info@niemann-pick.org.uk
Website: www.npuk.org
Registered Charity Number: 1144406 / SCO45407

Prevalence of Niemann Pick: Type A and B: 1:250,000 / Type C: 1:120,000

What is Niemann-Pick Disease?
Niemann Pick Diseases are a group of rare, inherited, metabolic conditions which are life-limiting and currently do not have a cure or effective treatment. The diseases have a wide clinical spectrum and a variable age of onset from birth upwards.

What support is available?
Niemann Pick UK (NPUK) was founded in 1991 to provide specialist support to families affected by Niemann-Pick diseases. NPUK are currently delivering a five year project, called ‘Shaping our Future Together’ to support the increasing number of adults diagnosed with NPC arising from the ‘Think Again, Think NPC’ campaign. In addition to the on-going practical and clinical work with families, NPUK aim to reach out to newly diagnosed patients and their families and to more members from BME communities, dads and siblings as well as offering genetic and bereavement counselling services.

The four aims of the project are to

  1. Improve the mental wellbeing of our adult, newly diagnosed and hard to reach patients and their families.
  2. Increase the emotional resilience of patients and their families in coping with the impact of disease progression.
  3. Increase the knowledge and self-confidence of our patients and families when dealing with health and statutory services.
  4. Help families in crisis access the support and services they need.

Breaking Down Barriers Project
Niemann Pick UK do not require funding from Breaking Down Barriers as they have received funding from a Big Lottery grant to carry out work in this area. However, they are taking part in all other aspects of the project to enhance their understanding and to share their knowledge.

Year 2 Project
NPUK will remain part of Breaking Down Barriers but do not require funding for their work as this is provided by a Big Lottery grant.