Posts tagged ‘rare and undiagnosed Network RUN’
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Wisconsin Rare Events for 2017
2017 WISCONSIN RARE EVENTS Wednesday, January 25th, 2017: Milwaukee Bucks vs. Philadelphia 76ers 7:00 PM – Bradley Center Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203 The...
RUN Event at Primary Children’s Outpatient Center on January 31st!
Gina (me) will be in Salt Lake City for a few days to watch the Milwaukee Bucks play the Utah Jazz next week! I could not pass up the opportunity...
RUN wins RareVoice Award from the EveryLife Foundation for Rare Diseases
Words cannot express how much the RareVoice Award means to me. It was a night that I will cherish for the rest of my life.The Abbey represents the...
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...
Gina’s “Living in a Diagnostic Odyssey, Times Four”
Very excited to share my journey through our diagnostic odyssey this week at the Illumina supported Satellite Symposium at the ACMG Annual Clinical Genetics Meeting in Tampa, FL! ...
Aliyah-VACTERL Assoc., Gastroparesis, Chronic Lung Disease
Aliyah is 14 when she was born she weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...
To Whom It May Concern and To All Mothers:
2017 Update: The Szajnuk’s Diagnostic Odyssey Written in July 2014: To Whom It May Concern: I am a mother of three young children, and all three have been diagnosed...