Recent Posts
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Rachel Platten sends her love to our RUN families and our #RareTeens on her birthday!
Thank you Rachel Platten for sending your love to our Rare & Undiagnosed Network RUN families and our #RareTeens!!! You are such an inspiration to the entire #RareUndiagnosed...
National Ability Center Volunteers Needed for their Barn Party on June 4th!
Volunteers Needed! Barn Party: June 4, 2016 Howdy Cowboys and Gals, We need a few more ranch hands to make the Barn Party a success. Can you help...
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...
Fox 13 News: Kearns teen battles rare, incurable disease to return to softball diamond by Tamara Vaifanua
Kearns teen battles rare, incurable disease to return to softball diamond POSTED 10:14 PM, MAY 14, 2016, BY FOX 13 NEWS AND TAMARA VAIFANUA “KEARNS, Utah – A...
National Ability Center Event today, May 14th: RUN’s Undiagnosed Day Without Doctors
Time for some Rare FUN today! This is an intimate event for our Rare and Undiagnosed families to share their diagnostic odyssey and to network about doctors, treatments...
“Racing for RUN” by Matthew Webster
“Racing for RUN” by Mathew Webster Maverick Modified #97 Driver: Matthew Webster, age 30 Spouse: Ciara Webster, age 27 Children: McKynlee Webster, age 5 I chose to “Race...
Dear Mom, Happy Mother’s Day! by Gina Szajnuk
May, 2016 Dear Mom, Happy Mother’s Day! Thank you for teaching me the Golden Rule, “One should treat others as one would like others to treat oneself.” Thank...
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)...