Guest Blogger

Are you interested in submitting your story or speaking out on an issue in the rare disease community? Don’t be shy! Click here to submit your patient story--and click here to write a guest blog!

“Pain Won’t Stop Me From Making Memories,” CRPS Patient Takes Back Up Her Favorite Winter Sport
by Kerry Hussey I’m 30 years old now, but was diagnosed with RSD/CRPS back when I was 13-years-old. I was one of the “lucky” ones,… Continue Reading
The Atlantic: What If (Almost) Every Gene Affects (Almost) Everything?
By Ed Yong (SOURCE) In 1999, a group of scientists scoured the genomes of around 150 pairs of siblings in an attempt to find genes that are… Continue Reading
Sick But Social: When You Aren’t Sure You Can Live Like This
By Stacey Philpot Like a bird I soared, high above the clouds, soaking in the sun, inhaling the sheer goodness of life. I breathed in… Continue Reading
Becker_MD
Living an Independent Life with Becker Muscular Dystrophy
by Josh Wagner At 23, I am a college student who drives to class and shares an apartment with a roommate away from my parents. While these… Continue Reading
Run for a Cause: Super Kids Mission Zero 5k
Organization: Super Kids:Mission Zero, Inc. Submitted by: Jessica Rohn   Super Kids: Mission Zero, Inc. is an Indianapolis, IN based… Continue Reading
Rare Brain Disorder Has Family Considering Relocation for Better Assistance
by Kathryn Baatz My son, Andrew, was diagnosed at four months old with a very rare brain disorder known as schizencephaly. His full… 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