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.
With the risk of catching coronavirus steadily decreasing, the UK Government yesterday announced changes to the future of the shielding programme. From 6 July those shielding will be able to meet outdoors, in groups of up to six people from outside their household, with social distancing. If you live alone (or are a lone adult with dependent children under 18), you will be able to form a support bubble with another household. From 1 August, many people will no longer need to shield, and the advice will be that you can visit shops and places of worship, but you should continue to maintain social distancing whenever possible...Read more