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A total of 318 posts are filed under Series
My Life with Ehlers Danlos: Finding Your Tribe When You’re Rare
by Tiffany Early A few weeks ago, I went to Disney World- the absolute happiest place on earth. While there, I had my first experience… Continue Reading
RARECast: Navigating the Challenges of Rare Disease Drug Development
  Clinical trials for rare disease therapies face many challenges. Some of these include the small patient population on which they draw,… Continue Reading
Sick But Social: When We Drown in Our Not Enoughness
By Stacey Philpot “Not to be mean, Mommy, but Daddy is nicer than you.” These are the words my five-year-old daughter graces me with as… Continue Reading
RARECast: Accelerating Rare Disease Drug Discovery
For many rare disease patients, the drug discovery and development process moves slower than the diseases they are battling. Earlier this… Continue Reading
RareCAST: Experimental Rare Disease Therapy Wins New FDA Reg Med Designation
  Last month the U.S. Food and Drug Administration granted Enzyvant both Breakthrough Therapy Designation and the newly established… Continue Reading
RARECast: How Rare Disease Patients Can Get their Voices Heard in Drug Discovery and Development
  There is increasing recognition of the important role patients can play by providing their insights into the drug discovery and… Continue Reading
Sick But Social: When You Aren’t Sure You Can Live Like This
By Stacey Philpot Like a bird I soared, high above the clouds, soaking in the sun, inhaling the sheer goodness of life. I breathed in… Continue Reading

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