Posts tagged ‘RUN’
RUN’s Undiagnosed Day Without Doctors at the National Ability Center
This was an intimate event for our Rare and Undiagnosed families to share about their diagnostic odyssey and to network about doctors, treatments and therapies. The activities included...
A Dedicated Rare Disease Platform to Find Answers. Faster.
We have tirelessly searched for answers and have sacrificed nearly everything for us and for our loved ones with a rare or undiagnosed disease to receive the information and...
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...
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...
Michael-Undiagnosed
My name is Michael and I am 13 years old. (Diagnosis still not fully determined) I live in the United States of America. I’ve been fighting to...