The following family stories, developed by Packer Forbes on behalf of Actelion Pharmaceuticals, aim to raise awareness of Niemann-Pick Disease Type C (NP-C) amongst healthcare professionals and the public, to improve recognition of symptoms and to reduce feelings of isolation in those affected.
These personal stories highlight the impact that NP-C has on Hollie and Annie, as well as their families.
Annie’s Story – Living with a Genetic Condition
Hollie’s Story – Our Journey to Diagnosis
Summary of Hollie’s and Annie’s Stories
Summary of the work of NPUK
In 2011, NPUK was delighted to have been awarded £25,000 in recognition of its work to support people affected by Niemann-Pick diseases. The Charity beat more than 400 organisations from around the UK to become one of ten winners of the GlaxoSmithKline (GSK) IMPACT Awards, run in partnership with health think-tank The King’s Fund. The following short films gives an overview of the work undertaken by NPUK.
We are pleased to share the full programme for this year's Annual Family Conference & Interactive Workshop on Niemann-Pick Diseases, which will be the very first digital Conference we have held. Despite this we are sure it will be an informative, supportive, and entertaining weekend for all of the friends and families within our community...Read more