Dear NNPDF Families and Friends,
A major hurdle we learn of time and again from our NNPDF family membership is the challenge to a diagnosis. Due to this, Niemann-Pick Type C takes, on average, five years to diagnose. Because NPC is treatable this means that patients live for five years without treatment or access to support.
Think Again. Think NP-C is a campaign identified and developed by the International Niemann-Pick Disease Alliance (INPDA), co-founded by the National Niemann-Pick Disease Foundation (NNPDF), to reduce the time to diagnosis by supporting healthcare professionals who are unfamiliar with NP-C to recognize the key signs and symptoms of the disease. This will help patients by speeding up diagnosis so patients can access treatment and support.
For more information visit the NNPDF web page Newsline: http://www.nnpdf.org/NewsLinePage.html#ThinkNPC
The NNPDF central office is working on step by step goals for a families to build upon this campaign in September, as well as key focus during October Awareness Month.
We WILL Persevere in our quest for a cure!