09.04.24
03.04.24
Jackson Pountney, a PhD student at Aston University in Birmingham, needs your help. Jackson is undertaking a research project that will help us to better understand the impact of NPC on quality of life. This important work will help to advance understanding of NPC and support access to treatments in the UK and beyond...
Read more13.03.24
06.03.24
Yesterday, we were greatly disappointed to learn that the UK's National Institute for Health and Care Excellence (NICE) has decided not to recommend Sanofi's Xenpozyme (olipudase alfa) as a treatment for acid sphingomyelinase deficiency (ASMD; Niemann-Pick Disease) in people with type AB or type B...
Read more08.02.24
We're pleased to announce this year's Regional Family Days, designed to bring our community together for support and solidarity. Here's the schedule...
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