Subscribe to
this category


A total of 930 posts are filed under Insights
Lost in Translation
If you want to understand the value of patient-centered outcome measures, consider people with the rare progressive muscle disease Duchenne… Continue Reading
A Christmas Story
  Caroline Harding decided to throw a Christmas party. She wanted to do it for the many young people, who like her son Columbus, had a rare… Continue Reading
Why the Tax Bill Poses A Double Threat to My Family
My son Jack spent the first four weeks of his life screaming in pain and crying from hunger. When he was two-weeks-old, the pediatrician… Continue Reading
Paying for Value
Daniel S. Levine The drug industry long justified the pricing of its products on the basis of the high cost of R&D and the need for… Continue Reading
Shared Goals, Rather than a Transactional Approach, Can Keep Relationships with Industry Ethical
Katie Jensen Rare disease patient advocacy organizations face ethical issues regarding their relationships with the pharmaceutical industry.… Continue Reading
“Pain Won’t Stop Me From Making Memories,” CRPS Patient Takes Back Up Her Favorite Winter Sport
by Kerry Hussey I’m 30 years old now, but was diagnosed with RSD/CRPS back when I was 13-years-old. I was one of the “lucky” ones,… Continue Reading
NPR: A Couple’s Quest To Stop A Rare Disease Before It Takes One Of Them
by Rae Ellen Bichell In 2010, Sonia Vallabh watched her mom, Kamni Vallabh, die in a really horrible way. First, her mom’s memory… Continue Reading