Happy New Year! January is a time to recap and look forward. The President delivers the State of the Union Address. (Those of us who grew up watching TV in … READ MORE

Rare Disease Day was Feb. 28, 2015. I particularly like when it falls on Feb. 29 on a leap year, appropriately very rare. To honor the occasion, we are sharing … READ MORE

We’ve recruited 93 cancer patient projects this year across 25 different tumor types since teaming up with WhatNext.com, the official social health site of the American Cancer society. Projects have … READ MORE

  Rare Patient Voice conducted a survey with n=1001 patients and caregivers to learn about the social and emotional impact of Rare Diseases.  Below is a summary of results: Rare … READ MORE

Happy New Year! With each year we of course set resolutions that are mostly forgotten. But I’ve heard if you tell others, you are more likely to follow through, so … READ MORE