This article and other news can be found in the latest issue of our newsletter which can be downloaded/viewed here: April 2018. Back in April 2015, the very first beta-testers started participating in our online natural history study, PKANready. These early testers helped us work out the bugs and finalize the design before the full […]

Those of you who attended this year’s NBIA Disorders family conference may recall Dr. Hayflick, Dr. Hogarth and Allison emphasizing how important it is to collect natural history data in order to get the NBIA community ready for any drug trials that may be coming down the pipeline. We are now taking the first step […]