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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...
Taylor-12q14.1 Microdeletion Syndrome
Taylor-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...
Face to face: A Fairy-tale by Greg Lopez
Face 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...
UNDIAGNOSED is a DIAGNOSIS: The Szajnuk’s Journey Updated!
UNDIAGNOSED 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...
Rachel Nielsen: Admitted For Serious Infection and Prepping for Surgery
Kate 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...
Rachel Nielsen: Harmons Cooking School Experience from Make-A-Wish
Special thanks to Chef Evan Francois and Photographer Renata Stone. Thank you to everyone at Harmons Cooking School. Thank you to Bob Leibo and everyone at Make-A-Wish. I...
Stockton-Undiagnosed
Stockton: Age 2 Diagnosis: Undiagnosed USA Stockton is our Undiagnosed Medical Mystery, though we prefer to call him our medical miracle. Though his root condition (undiagnosed genetic syndrome)...
Lashay-Undiagnosed
Lashay: Age 16 Diagnosis: Undiagnosed (POTS, Chronic Illness) USA After being exposed to all sorts of variables(even being bitten by a raccoon) in Costa Rica, Lashay returned home...
Bertrand-N-glycanase deficiency (NGLY1)
Bertrand: 8 years-old Diagnosis: N-glycanase deficiency USA Bertrand was born full-term via natural delivery. His birth weight was a surprising 5 lbs. 12 oz. (an earlier ~36 week...
Debbie, Heather & Logan-Miller Syndrome and…
Debbie Jorde: Multiple Sclerosis (MS) Mother to Heather & Logan Heather Madsen: Miller Syndrome, ADHD, Autism, ciliary dyskinesia (PCD), Hearing Impairment Logan Madsen: Miller Syndrome, ASD, ciliary dyskinesia...