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Guest Bloggers

A total of 55 posts are filed under Guest Bloggers
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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
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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
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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
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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
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“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 Slate.com 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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