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June 4, 2017 10:37 am
9We are celebrating Ava’s tenth birthday today! I remember the feeling I had the second I found out I was pregnant with Ava. I waited for years to...
June 1, 2017 10:35 pm
5Hey Bro, I know writing letters and sharing sappy sibling moments together isn’t really our thing, but I felt I needed to address something that is happening in...
April 29, 2017 10:01 am
4All 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...
April 27, 2017 5:31 am
11Anyone 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...
April 16, 2017 9:26 pm
0Ava Szajnuk (Zanik) is a 17-year-old junior at Skyline High School in Salt Lake City, Utah. She was born a healthy child and hit all of her milestones...
April 6, 2017 9:49 am
7The 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...
April 1, 2017 3:36 pm
4Taylor-age 3 Diagnosis-12q14.1 Microdeletion Syndrome Photographs were donated by Season Atwater of Aware of Angels. This story first appeared on Aware of Angels. Our little guy Taylor...
March 30, 2017 3:57 pm
2Face to face: A Fairy-tale by Greg Lopez Face to face. Awestruck! As the saying goes, a picture is worth a thousand words. But it is also true that...
March 21, 2017 10:40 am
4UNDIAGNOSED IS A DIAGNOSIS: Living in a Diagnostic Odyssey x 4 By Gina Szajnuk I have three children that are officially diagnosed as Undiagnosed. They have an Undiagnosed...
March 11, 2017 10:17 pm
4Kate Nielsen received a call this morning at 1:00a that her daughter, Rachel, does in fact have a bacteria infection in her central line. She will have it...