Posts tagged ‘Rare Disease Day’
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Rare Disease Week 2017
RUN will be doing the following during Rare Disease Week! Sunday, February 26, 2017: Milwaukee Bucks vs. Phoenix Suns 2:30 PM – Bradley Center Address: Bradley Center, 1001 N...
Updated Rare Disease Facts and Figures from NORD
Updated Rare Disease Facts and Figures from the National Organization for Rare Disorders (NORD) Below are the updated facts NORD will be using in 2017. The following facts have vetted...
Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families
Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....
Jaderee-Eosinophilic Colitis
Jaderee Ann, 17. I have eosinophilic colitis. I live in the United States of America. I have, acid reflux, nausea, occasional vomiting and constant, uncontrollable diarrhea. It started...
Calen-Undiagnosed and Deletion/Duplication Chromosome 19
My name is Calen. I am 15 years old. My parent’s have many ridiculous nicknames for me, but I can best be described as fun loving fury. I...
Jazz to Host 30 Rare Children at Feb. 27 Game Kids to stand with Jazz, Nets during National Anthem
Jazz to Host 30 Rare Children at Feb. 27 Game Kids to stand with Jazz, Nets during National Anthem Media interested in interviews and access should contact Gina...
Michael-undiagnosed-with multiple diagnosis including dysautonomia…
Hello, my name is Michael. I am 13 years old. I have dysautonomia, POTS (Postural Orthostatic Tachycardic Syndrome), MCAD (Mast Cell Activation Disease), apnea (central, obstructive, and mixed),...
Ricki-Neurofibromatosis Type 2
Hi my name is Ricki. You look at me and probably see just another normal face in a normal crowd. But there is more than what meets the...