Subscribe to
this category

Patient Stories

A total of 512 posts are filed under Patient Stories
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
Chicken Pox Triggers Onset of Symptoms of Spinocerebellar Ataxia Type 7 in Child
By Andrea Downey, Digital Health Reporter by The Sun A FOUR-year-old boy is wasting away in front of his parent’s eyes after chickenpox… Continue Reading
Late Gorham-Stout Disease Patient Honored During Event
By Alyssa Pressler The Dallas community was heartbroken when they it lost Jasmine Malker, a local woman who was… 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
“Often Times You End Up With More Than One Chronic Illness”
By Nisa Katz (Nisa will be in attendance at this year’s Patient Advocacy Summit. Come join us!)  When I was 22 years old, I finally got… Continue Reading
A Community for Carter: The 5q22.2 Diagnosis That Changed Our Lives
by Kristen Cleveland  Carter was born a beautiful healthy baby boy on September 7th 2014. He had eyes as blue as the sea. I remember… Continue Reading
Chronic Inflammatory Demyelinating Polyneuropathy
Misdiagnosed for Two Decades, CIDP Patient Vows Not to Quit
by Melissa Jenkins  (source)   When Chris Humby of was misdiagnosed with Multiple Sclerosis (MS) 25 years ago, he… Continue Reading

Follow us on Twitter

Upcoming Events

Sep 14

Rare Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

Rare Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

Rare Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

Community Nominated Ceremony and Reception

September 15 @ 4:30 pm - 9:00 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

Rare Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm