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Guest Bloggers

A total of 55 posts are filed under Guest Bloggers
Check Out This Empowering Rare Disease Playlist!
By Tiffany Early In this month of thankfulness, I want to take time to mention how very thankful I am for music. Now, don’t misunderstand.… Continue Reading
The First Time I Stood Up to My Child’s Doctor
by Lisa Moreno-Dickinson My first toe to toe was with my son’s pediatrician who diagnosed him with everything under the sun when he… 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
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2016 Patient Advocacy Summit: How to Tell Your Story
Daniel S. Levine Rare disease patients have such powerful stories to tell that they are capable of raising money, advancing legislation, or… Continue Reading
How Isolation Impacts Those Suffering With Rare Disease
by Daniella Koren, for MediaPost There’s little in life as jarring as being diagnosed with a serious disease like cancer or diabetes; the… Continue Reading
“My Best Advice as a Caregiver” by Annie Achee of the National Leiomyosarcoma Foundation
  I am not the patient, but the caregiver of my husband, Dr. Mitchell (“Mitch”) D. Achee, Radiologist, and Leiomyosarcoma (LMS)… Continue Reading
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Parenting a Child with a Terminal Illness: The Cupcake Revolution
Thanks to for this story. Three years have passed since I published “Mothering Cal” in Slate, just before Mother’s Day… Continue Reading
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