Dear NNPDF Families and Friends,
On the 27th day of our October 2014 GLOBAL Niemann-Pick Disease event, we are continuing with an introduction to the International Niemann-Pick Disease Alliance (INPDA). Today, Day 27, we turn our attention to another project being spearheaded by the INPDA ~ the NEW International Niemann-Pick Disease Registry (INPDR).
In 2013, the INPDA was awarded a grant in support of creating the FIRST International Niemann-Pick Disease Registry (INPDR) database ~ truly a new concept in rare disease registries which will improve the care of Niemann-Pick patients across the world. The goal is for the INPDR to build and ultimately provide all with accurate numbers of those affected with NPD around the world, as well as, allowing patient advocacy groups globally to support a wider spectrum of families.
A registry is an important tool for collecting and recording information about a disease: how it affects and progresses in an individual patient and how it presents to those involved in diagnosis, treatment and research.
To view the full post, visit the NNPDF Newsline web page: http://www.nnpdf.org/NewsLinePage.html#Oct27