Measuring the Value of Therapies for Ultra-Rare Diseases

  The pricing of drugs is characterized by a…

What is the matter with Tarsila? An Undiagnosed Medical Disorder.
Tarsila is a year-and-a-half-old girl who suffers from an undiagnosed medical disorder. She cannot sit on her own or crawl, she still has no… Continue Reading
International Batten Disease Awareness Weekend (June 4-6)
This weekend is International Batten Disease Awareness Weekend, an event intended to unite people worldwide to pursue the common goal of… Continue Reading
She made it! Cindy Abbott reaches summit of Mt. Everest!
At the age of 48, after watching a documentary on TV, Cindy Abbot decided to start training for mountain climbing. Soon after, she was… Continue Reading
Primary Care and HIT – What do they mean for you?
Howard Liebers of MarbleRoad asks questions about how efforts in both primary care and health information technology may impact families… Continue Reading
Rare Disease Recurrent Respiratory Papillomatosis – Perspective of Family Friends
To know Nora, Ayrie and Shiya is to absolutely love them.  Spend an hour with Nora and you’ll see how much she cares for her boys, spend… Continue Reading
Meet CheckOrphan
A big thanks to the folks at CheckOrphan for celebrating the birthday of blue jeans with us on May 20.  Read the CheckOrphan blog post… Continue Reading
How 'Brain Training' Can Make You Smarter
Neuroscientists are increasingly showing that there's actually a lot that can be done. It turns that the brain needs exercise in much the… Continue Reading