Posts tagged ‘Undiagnosed Rare Disease’
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April 21st: Salt Lake City Half Marathon on Saturday
Flyer donated by Erica Braymen, Ecosyse Join us as we cheer on awareness for undiagnosed rare diseases! Please join the Rare and Undiagnosed Network (RUN) at the finish...
Mediaplanet: “Undiagnosed” Persists as an Ominous Diagnosis for Rare Disease Patients
RUN recently participated in Mediaplanet’s Rare Diseases campaign where we united with likeminded industry leaders to educate Americans on the urgent need to gain public, private and federal...
RUN’s 2018 Rare Disease Day!
RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...
Szajnuk Update: Ava Szajnuk and our Undiagnosed Rare Disease
Ava Szajnuk’s CT on November 16, 2017: Technology is beautiful. Ava recently fell and hit her head in gym class. She suffered a head injury and a...
Today is Undiagnosed Day! Join Us to Honor the Undiagnosed Rare Disease Community
All rare diseases were once Undiagnosed. What does “Undiagnosed” mean? “An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease...
Undiagnosed: An Update on the Szajnuks
Anyone living with an undiagnosed disease knows how hard it is every single day to persevere. When the disease is invisible, it is even harder because you have to...
The Undiagnosed Alliance: Mission and Goals
The Undiagnosed Alliance (the Alliance) is a coalition of undiagnosed rare disease stakeholders coming together with the purpose to foster unified advocacy among patient organizations, individuals, and stakeholders...
The Mighty: “To the Person Who Left Me a Rude Note After I Parked in a Handicapped Spot” by Gina Szajnuk
This story originally appeared on The Mighty To the Person Who Left Me a Rude Note After I Parked in a Handicapped Spot You left a rude note...
Happy New Year to my RUN family
Happy New Year’s Day to all of our family and friends. I went back through our 2016 pictures and landed on this picture this morning. As we are...
“Scuff Mark” by Rachel Nielsen
You can do it, Rachel, I told myself as I visualized sticking the landing of my next skill. Trembling from anticipation, I wobbled, tightening my toes’ grip on...