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Guest Bloggers

A total of 70 posts are filed under Guest Bloggers
WIRED: A Radical Proposal For Preventing Rare Genetic Diseases
(SOURCE) One morning, A few months ago, I didn’t wake up. My 29-year-old heart had suffered from a sudden and complete cardiac arrest as I… Continue Reading
Rare Disease Report: China’s Rare Disease Policy (or Lack Thereof)
By James Radke of Rare Disease Report China is about to publish its first list of national rare diseases.   Given the population of China… Continue Reading
Alexi’s Story: One Mother Shares Her Daughter’s Journey With ADNP
Motherly instincts, intuition, whatever you want to call it— as mothers we know when something isn’t right, and we will persist until we… Continue Reading
Parent of a Medically Complex Child, “I am Always Choosing Between the Lesser of Two Evils”
My son Julian has always been a “sick kid.” He seemed to have infection after infection, picked up every cold that was around and was in… Continue Reading
Parents, Precision Medicine, Genetics and Autism – The Discovery of an Early-Age Biomarker for a Rare Syndrome Highly Linked to Autism
By Sandra Bedrosian Sermone Early diagnosis is key for the management of autism and most children are not diagnosed until their third or… Continue Reading
Invisible_Illness_Documentary
An Invisible Illness Survivor Turns Her Journey Into a Cinematic Resource for Patients
By Tasra Dawson My personal understanding of invisible illness started at a crosswalk in Atlanta during October of 2011. I was on a business… Continue Reading
What to Tell People About Your Rare Disease, or Not
By Joan Friedlander In a previous post, When Illness Messes with Your Promises, I briefly touched on the issue of communicating with people… Continue Reading