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March 2, 2017 10:45 am
0Myiles-age 4 Diagnosis-Merosin Deficient Congenital Muscular Dystrophy USA Myiles is 4 year’s old, he was born on September 7th 2012 5lbs 13ounces he was beautiful. When he was...
March 2, 2017 10:41 am
0Landon-age 4 Diagnosis-INAD(Infantile Neuroaxonal Dystrophy) Diagnosis Found through whole exome sequencing-INAD (Infantile Neuroaxonal Dystrophy) USA “Landon is 4 years old now! There are no words to express how thankful...
March 2, 2017 10:06 am
1Ethan: Age12 Diagnosis: Atypical Hemolytic Uremic Syndrome (aHUS) USA “Ethan was clinically diagnosed as having Atypical Hemolytic Uremic Syndrome (aHUS). A genetic, chronic, ultra-rare disease that can progressively damage vital organs, potentially leading...
February 27, 2017 8:25 pm
3Thank you Boris Diaw for donating 60 tickets through the player donation program to RUN! RUN is currently looking for thirty rare and undiagnosed children to make an...
January 25, 2017 9:25 pm
1Gina (me) will be in Salt Lake City for a few days to watch the Milwaukee Bucks play the Utah Jazz next week! I could not pass up the opportunity...
November 17, 2016 8:36 pm
4Words cannot express how much the RareVoice Award means to me. It was a night that I will cherish for the rest of my life.The Abbey represents the...
October 7, 2016 5:41 am
7It was an honor to share my journey with Utah Rare at the Global Genes RARE Patient Advocacy Summit along with Sharon King of Taylor’s Tale and the NC Rare Disease Network. The breakout...
October 2, 2016 9:31 pm
3Today was a good day. It was a really good day. It is one of those days that I will never forget. Ava, Oskar, Lucy and I stepped...
September 24, 2016 9:24 pm
0March 25, 2016 4:09 pm
5Thank 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....