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March 16, 2015 10:38 pm
2What an honor to be in their newsletter. We truly feel blessed to have found the National Ability Center and all of the wonderful people there. We look...
March 14, 2015 7:19 pm
26I have been blessed to meet the most amazing rare children as well as their strong mothers and fathers. No one can truly understand what they go through...
March 14, 2015 5:18 pm
5I read the post from the Dysautonomia Advocacy Foundation on Facebook earlier this week. It stopped my heart for a second. Christina “Tina” Tournant took her own life due...
March 10, 2015 5:38 pm
2I met with my specialists for yet another round of appointments over the past week. There are still no answers for me. I had a few more diagnostic...
March 6, 2015 10:55 pm
1PLEASE REGISTER AND VOTE! THIS COULD HELP OUR FAMILY!! http://markhoffmankc.com/wearable-devices-precision-medicine-and-temperature-regulation/ Wearable Devices, Precision Medicine and Temperature Regulation This entry was posted in #Research#ResearchImprovesLives#ResearchSavesLives on March 6, 2015 by Mark...
March 2, 2015 12:00 am
3I felt honored to be a part of the Utah Rare’s 2015 Rare Disease Day Symposium. It will be a day that I will never forget. Not only...
February 28, 2015 7:15 pm
0LIVING IN A DIAGNOSTIC ODYSSEY, TIMES FOUR Good afternoon. My name is Gina Szajnuk and this is my husband Justin Zanik. We have three undiagnosed children. Ava, is...
February 26, 2015 10:03 pm
1UTAHRARE.org Events Friday, February 27th 2015: Rare Disease Day State House Event 3:00pm – 5:00pm State Capitol Building, Rotunda 350 North State Street, Salt Lake City, UT 84114 Utah...
February 26, 2015 9:41 pm
2We left the house at 5:30a this morning and headed to the hospital. Ava, Oskar and Lucy were scheduled to be scoped. It is exhausting going through this...
February 26, 2015 9:18 pm
2It warms my heart to see how strong Harlie is. She’s the sweetest girl I’ve ever met and is such an inspiration to me, and many others. I...