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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...
Hailey Sampsel shares about her 15th birthday
November 22nd: Yesterday was my 15th birthday. I’ve been dreading that day for awhile now because it’s a reminder of how long I’ve been sick. Last year, I...
Not cool to Bully a Rare kid
Harlie Valdez received the following text last night from a teenage boy. “I hope you don’t get better. I hope you get sicker. It was better when you...
Amazon Smile: Please donate to the Rare and Undiagnosed Network this Holiday season!
RUN is FINALLY starting to solicit for funds! We need your help to keep RUN going in 2016! We have big things planned already! I love all of...
Dear Healthcare Professional by Melissa Nearman
Dear Healthcare Professional, Please understand that coming to the emergency room was my last resort. I can guarantee I tried to talk my way out of being brought...
Kate Nielson shares about Rachel’s day with her family. A day without doctors.
Kate Nielson: Rachel had a great day being with family and friends at her brother, Nicholas’, wedding yesterday. She looked beautiful and enjoyed being out of the hospital. ...
Hailey Sampel: Happy 15th Birthday but ended in the ER. She was admitted during the night
Amy Sampsel: We ended up getting admitted to NTU. We couldn’t see a neurologist in the ER and I said we needed help. They have talked to one now...
RareArtist.org: Please vote for Ava Szajnuk’s drawing!
Link to RareArtist.org “Ava’s View” by Ava Szajnuk, 8 yrs old. This drawing was when I was 6 years old and in the hospital for weeks. I was looking...