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Guest Bloggers

A total of 67 posts are filed under Guest Bloggers
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
Importance of Organization for a Child with a Rare Disease
By mother and advocate Taylor Gurganus Having a child with a rare disease is a loving, caring, busy, never ending, supporting, advocating… Continue Reading
How to Pack for an Extended Hospital Stay
For many rare disease patients, the thought of a long hospital stay can bring up a lot of emotions—despair, fear, even the stirrings of… Continue Reading
The Side Order of Anxiety and Depression You May Receive When You Are the Caregiver of a Loved One
by Kate Welch Anxiety and depression can quickly siphon the strength of the strongest person. Caring for a loved one who suffers from the… Continue Reading
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