Search results for ‘Ava’
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Living with cold intolerance
Living in Park City is a blessing. It is absolutely beautiful. The snow finally came… Unfortunately, it does not make it easy for us to exist outside. A...
Programs
Educating America on Extraordinary Diseases Raising Awareness Encouraging Tolerance The Rare Disease United Foundation and the Rare & Undiagnosed Network would like to invite middle schools and...
Denied
“Based upon current available information, coverage cannot be approved because there is insufficient scientific evidence to demonstrate the effectiveness of validity of whole genome sequencing for diagnostic purposes...
Resources
123Genetix 123Genetix is an innovative social enterprise created to empower rare disease research. At 123Genetix we believe that rare should not mean forgotten. To empower rare disease research...
Advisory Board
The RUN Advisory Board Mission & Vision Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in...
Lucy Szajnuk
This is a section of Lucy’s story from The Szajnuk’s Journey I feel like I missed an entire year of Lucy’s milestones. Lucy started showing similar symptoms in...
Update on The Szajnuk Family (aka The Zanik Family)
April 27, 2014 Dear Family and Friends, I wanted to update you again on our family. I have had so many wonderful people reaching out to us recently...
Oskar Szajnuk
2013: Oskar Szajnuk was diagnosed at the age of four with an unknown genetic dysfunction, an autonomic neuropathy, small fiber polyneuropathy. He is extremely low in ferritins, which...
Lucy Szajnuk
Lucy Szajnuk has an undiagnosed genetic dysfunction, autonomic neuropathy, small fiber poyneuropathy. She is extremely low in iron. Her ferritin levels are extremely low. She has restless leg...
Testimonial from Tonya Condas
About 30 years ago my mother was diagnosed with progressive type Multiple Sclerosis. She was a stay at home mom and raised me and my brother with no...