Hello. My name is Claudia Pinzon. I’m 31 years old. I would like to share my POTS story with you. I’ve been having lots of… Continue reading My POTS (Postural Orthostatic Tachycardia Syndrome) story
Results for "light up for rare"
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Geoffray and his sister (who is 8 years older than he is) have suffered from poor sight since birth, without a precise diagnosis. Geoffray had… Continue reading Meet Geoffray
Summary I have officially survived Acute Lymphoblastic Leukemia (ALL) seven times! On October 26, 2010, I began treatment at Stanford University Cancer Center. When I… Continue reading Fight For Cures
6 years ago I was a healthy hard working mom of 2 teenagers. Then one day when I was at work I realized I could… Continue reading It is just a vitamin
I have always heard your teenage years are the hardest. If I had only known how horrific they would soon become for me I would… Continue reading Jessi’s Journey
Watch our Rare Disease Day highlights slideshow! First of all, a big THANK YOU for all of your efforts. Rare Disease Day 2016 was bigger… Continue reading Thank you for another successful year!
In March 2013, I went completely deaf in my right ear. I was laying on my bed and suddenly, it felt like someone had just… Continue reading Sudden Sensorineural Hearing Loss (SSHL) aka Sudden Deafness
Our odyssey with rare diseases began in November 2014 when my then 14 year old, intelligent, and athletic son, Jaden, was diagnosed with Chiari Malformation.… Continue reading From Chiari to POTS to Lyme
I like to consider myself a fairly tough person. Raised by a large family, growing up helping my grandparents on the farm I grew up… Continue reading My Journey