Posts tagged ‘Undiagnosed’
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RUN’s Undiagnosed Day Without Doctors at the National Ability Center
This was an intimate event for our Rare and Undiagnosed families to share about their diagnostic odyssey and to network about doctors, treatments and therapies. The activities included...
LAS VEGAS REVIEW-JOURNAL: Reno man’s suffering from undiagnosed disease also traps his mother By John M. Glionna
Reno man’s suffering from undiagnosed disease also traps his mother By JOHN M. GLIONNA SPECIAL TO LAS VEGAS REVIEW-JOURNAL RENO It’s late afternoon and 23-year-old Grayson McClure is...
Szajnuk’s Whole Exome Sequencing (WES) report by the Rare Genomics Institute: Science 2.0
At Rare Genomics, we are focused on breakthrough discoveries that save lives. Science 2.0 is an innovative approach to conquering rare diseases that puts patients at the center of...
Open Science Prize announces six team finalists in first phase of competition and MyGene2 gets our VOTE!
MyGene2 is a free, public, searchable site developed for families with rare genetic conditions to share health information (e.g., clinical findings) and genetic data (e.g., candidate genes, DNA sequence data)...
Unexpected Mother’s Day Gifts: Szajnuk’s WGS Results, Acceptance into the UDN x 4 and more…
Update on our Szajnuk’s Diagnostic Odyssey x 4: This week was a very memorable week for our family. Our first meeting regarding the results from our Whole Genome Sequencing (WGS) was...
Fox 13 News: “Undiagnosed Day” highlighted in Utah for the first time by Tamara Vaifanua
POSTED 7:40 PM, APRIL 29, 2016, BY TAMARA VAIFANUA SALT LAKE CITY – Gov. Gary Herbert declared April 29 Undiagnosed Day. For dozens of Utah families, it’s a...
RUN’s 1st Fundraiser with Papa Murphy’s in Park City: Now until we reach $1000!
Mike Lasater of Papa Murphy’s in Park City has generously committed to donating to the Rare and Undiagnosed Network this week from April 25th – May 1st in honor of...
OFFICIAL in Utah! Governor Herbert’s Declaration: Undiagnosed Disease Day is April 29th, 2016
The State of Utah will be the first in the history of the United States to declare April 29th, 2016, as Undiagnosed Disease Day. Currently, the Undiagnosed community...
As of today, Rachel Nielsen Update: Undiagnosed
Kate Michaelis Nielsen updates us on her daughter: Rachel Nielsen “Rachel’s GI was very concerned about the seizure like episodes she has been having. She decided that she needed...
Lashay Nicole Hamblin: Undiagnosed
Jodelle Hamblin: We have always been a healthy, active family. Starting at a young age, we have enjoyed hiking together, skiing, swimming, playing extracurricular activities. My husband’s motto:...