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A total of 749 posts are filed under Insights
RARECast: A Patient Attends “An Academic Conference for Everyone”
  Rare disease patients are exerting an increasing influence on every aspect of the healthcare continuum and this includes the area of… Continue Reading
Woman Suffers from Rare Disease that Causes Her Nose to Grow at an Extreme Rate
At age 46, Pamela Ichard is afraid to leave the house. The Louisiana native suffers from Rhinophyma, a rare skin condition that causes… Continue Reading
How to Tell Your Story: A Five Step Guide
by Chris Smith At the Global Genes summit last month, dozens of patient advocates packed into a hotel ballroom for a workshop on Telling… Continue Reading
Born with Barth Syndrome and Beating the Odds
Thanks to the Barth Syndrome Foundation and author Donna Strain for this article. I never got to meet my brother. Martin was born two years… Continue Reading
On a Limb and a Prayer: Diagnosed with Klippel Trenaunay Syndrome
Three-year-old Akshaj sounds mature for his age. But his precocity may have come at a significant cost. Akshaj suffers from Klippel… Continue Reading
Wally Travels Worldwide for Cantú Treatment
Wally was born at 34 weeks October 16th, 2014. He was diagnosed with Syndrome Cantú at four months old. In early 2016, genetic results… Continue Reading
RARECast: Teen Advocate Preaches Message of Kindness
Having a rare disease with visible manifestations can cause people to stare or give second looks. Peter Dankelson, a 16-year-old with… Continue Reading