Dear NNPDF Families and Friends,
With only 3 days left until the end of our GLOBAL Niemann-Pick Disease Awareness month, the NNPDF would like to share a new social media website to our NPD community, called Patients Like Me, where our families can interact, gain support and share their experiences with one another in a private setting.
PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.
PLM will allow our NPD families to share information and build your loved ones health-history on-line and will assist us to build an on-line medical data site which more closely outlines and reflects the progression of Niemann-Pick Disease. We will be providing more details and support information in the days to come.
Visit the NNPDF Newsline web page for more information: http://www.nnpdf.org/ASMDNews.html#Oct29