28.10.16
The days have been tiring recently for the family from Tessenderlo, but they endured the biweekly trips to Amsterdam for the tests with a smile! Not exactly surprising when you learn that this year marks sixteen years of searching…and that finally they have heard that treatment may be possible.,,
Read more28.10.16
The Quinn Madeleine Foundation has partnered with Baby Genes Inc. to provide diagnostic carrier screening at no charge to hundreds of people impacted by Acid Sphingomyelinase Deficiency (ASMD), also known as Niemann-Pick Disease Types A & B, a severe lysosomal storage disorder. Type A (NPA) is always fatal by toddlerhood...
Read more27.10.16
Perlara and Novartis join the fight against Niemann-Pick Disease: Perlara was founded in February 2014 and is the brainchild of molecular biologist Ethan Perlstein. Perlara is a biotech startup based in the USA, whose mission is to discover personalized cures for diseases rare and common...
Read more20.10.16
Star Online is an innovative system for supporting and measuring change when working with different client groups. It is well researched, widely used and recommended and from its initial development for working with homeless people, it now covers many different client groups. At NPUK we decided to introduce the Star...
Read more19.10.16
Are you an adult or are you caring for an adult with a Niemann-Pick disease? Would you like to be part of our exciting new project involving iPads? We have been very lucky to get some funding from the Big Lottery, as part of our Shaping our Future Together project, to extend our pilot iPad project to adult NP patients and their families...
Read more
