Subscribe to
this category


A total of 313 posts are filed under Series
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
RARECast: One Patient’s Difficult Road to a Rare Diagnosis
Porphyria is a rare and intensely painful blood disease. Because it can manifest itself with symptoms similar to those caused by far more… Continue Reading
RARECast: How Researchers Diagnosed Four Patients with a Never-Before-Identified Rare Disease in a Day
  Diagnosing a rare disease can take years. When it’s a disease that’s never been identified before, the search for a diagnosis can be… Continue Reading
RARECast: Stem Cell Gene Therapy Restores Immune System in Kids with SCID
Researchers at UCLA have developed a stem cell gene therapy treatment for children born with the rare, life-threatening condition… Continue Reading
RARECast: Rare Disease Advocates Push for Incentives to Drugmakers Pulled from Cures Act
  Legislation that would provide incentives to drugmakers to repurpose existing pharmaceuticals as rare disease treatments is once again in… Continue Reading
My Life with Ehlers-Danlos: A Thank You to Social Media Friends
By Tiffany Early The trees outside my window are blooming. My house feels humid, and I’ve sneezed half a dozen times while trying to type… Continue Reading
RARECast: Non-Profit Drug Company Seeks to Advance Rare Disease Therapies
  The high cost of drug development and the small populations for individual rare diseases can make it difficult to attract drug companies… Continue Reading

Follow us on Twitter

Upcoming Events

Sep 14

RARE Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

RARE Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

RARE Patient Advocacy Summit

September 15 @ 8:00 am - 4:30 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 5:00 pm - 9:30 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

RARE Day of Beauty

September 16 @ 12:00 pm - 5:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm