We have collaborated with Orphan Disease Center at University of Pennsylvania on a project meant to improve the way patient foundations work with data collected through patient registries. As a result of the project slideshow as well as FAQ were created.
Slideshow: https://youtu.be/iOWzQXhRtFY
FAQ: https://www.orphandiseasecenter.med.upenn.edu/patientregistryfaqs
