Day 30 ~ October 2014 as GLOBAL NPD Awareness Month ~ Patients Like Me Additional Details
Dear NNPDF Friends and Families,
Day 30 of our 2014 October GLOBAL Niemann-Pick Disease Awareness Month event, allows us to delve deeper into the PatientsLikeMe (PLM) program and share how it can be used to not only to benefit individual families on behalf of their loved ones diagnosed with NPD, but by our NPD scientists, researchers and doctors as well, who are working diligently towards finding a therapy for Niemann-Pick Disease.
The National Niemann-Pick Disease Foundation is partnering with PatientsLikeMe (PLM), to offer our NPD membership an additional tool to network and communicate with one another. As social media resources continues to evolve, we have found that the current social media platforms which help us to connect our community (ie: Facebook, Twitter, the NNPDF Yahoo List serve) don’t fulfill the medical and necessary privacy niche which the PLM platform does. PatientsLikeMe is the first of its kind when it comes to understanding the medical side of a disease, tracking that information and compiling it into an understandable format for those who enter the database at a later date. We envision the PLM site for Niemann-Pick Disease to become an essential tool for all of our NPD families ~ a go-to resource in how best to support their loved ones diagnosed with NPD.