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Series

A total of 307 posts are filed under Series
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
RARECast: Innovative Collaboration Model Drive Treatment for Rare Disease
Rare disease advocates, because of their diseases’ small population of patients, can find it challenging to capture the interest of… Continue Reading
RARECast: Girl with Rare Disease Inspires Search for Bone Marrow Donors
Hallie Bae Barnard is an eight-year-old girl with Diamond Blackfan Anemia, a rare condition that has set her family and friends on a search… Continue Reading
RARECast: A Quest for Tribe: Searching for Others with the Same Ultra-Rare Mutation
When Milo Lorentzen was born, concerns over his condition sent him to a neonatal intensive care unit where he spent the first ten days of… Continue Reading
RARECast: Raising Awareness in a Town with a History of a Rare Disease
Edgar Kline Jr.’s family can trace its involvement with a rare genetic disease back to the 1700s. In fact, Hagerstown, Maryland, where his… Continue Reading
ehlers-danlos
My Life with Ehlers Danlos: Illness Guilt
by Tiffany Early Initially, one of the most disabling components of my illness was the guilt that came with it. I constantly felt guilty for… Continue Reading
Adapting to Limitations: My Recent Adventures with Insurance and Remicade
by Joan Friedlander I’ve been receiving Remicade infusions for treatment of Crohn’s Disease for over 10 years now. Until a year ago, I… Continue Reading
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