Recent Posts
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Our Jump Into the World of Rare Disease and Atypical HUS
Anne Bruns shares… January 2013 Legos, Green Bay Packers football and all things science were the focus of Ethan- a typical 8-year-old boy. Healthy and full of energy,...
Ricki Jensen shares her journey
Hi, my name is Ricki Jensen. You look at me and probably see just another normal face in a normal crowd. But there is more than what meets...
Rachel Nielson’s Update: No surgery last week
So just to clarify with everyone, I did not end up having surgery on Wednesday. There were some miscommunications between my doctor and the surgeon. The surgeon wanted...
Lucy admitted. Ava with “mast cell” like rash. Goodbye 2015! Praying for answers in 2016!
Spending the Holidays with yet another urgent care visit, ER visit and hospital admittance, it made me realize how much I wanted 2015 to end. We need 2016...
Rachel Nielson’s update
So this happened!?? Quick update: I’m going into surgery tomorrow to get a J tube placed into my stomach. It’ll be like my NJ except instead of going...
Ava Szajnuk shares a video of her journey
Ava Szajnuk was asked by her 2nd grade teacher to share something about herself instead of bringing a present to her classmates. Ava wanted to share a video...
Hailey Sampsel admitted again. Discharged again. Still no answers and no end in sight.
Amy Sampsel: “Bad week. Really BAD week. And the week before this one. Was even worse. On Monday, December 7th, Hailey’s head pain was absolutely horrible. So, she...
Sen. Hatch and Sen. Klobuchar Become Senate Co-Chairs of Rare Disease Congressional Caucus
FOR IMMEDIATE RELEASE December 16, 2015 Media Contacts: Matt Whitlock (Hatch): 202-228-0210 Colin Milligan (Klobuchar): 202-228-6317 Sen. Hatch and Sen. Klobuchar Become Senate Co-Chairs of Rare Disease Congressional Caucus WASHINGTON—Sen....
Grayson McClure. Denied again. Someone please help me!?!
Kay McClure: Well…Merry Christmas to us again. Not really!?! Grayson was turned down for the 4th time from an undiagnosed program. Again, Grayson didn’t “fit” their program and should be...
RARE Teen Photo Project Sponsored by Aware of Angels, RUN and Utah Rare!
Season Atwater, Aware of Angels, will be the photographer of an extremely special project. We are looking for 10 RARE teenagers, between the ages of 13 years old and...