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“Congenital Generalized Lipodystrophy (AGPAT2) and Alani” by Rachel Daniels
Born in January 2014 was my sweet Alani. Just over 5 lbs, she was so small and frail but so beautiful. She had an awfully large belly to...
MyGene2 and RUN partnership. Please vote today!
Please take the time to vote for MyGene2 in the Open Science Prize!! Your vote matters! They are breaking down the silos! They are RUN’s dream! They will publicly share...
Updated Rare Disease Facts and Figures from NORD
Updated Rare Disease Facts and Figures from the National Organization for Rare Disorders (NORD) Below are the updated facts NORD will be using in 2017. The following facts have vetted...
The Mighty: “To the Person Who Left Me a Rude Note After I Parked in a Handicapped Spot” by Gina Szajnuk
This story originally appeared on The Mighty To the Person Who Left Me a Rude Note After I Parked in a Handicapped Spot You left a rude note...
Happy New Year to my RUN family
Happy New Year’s Day to all of our family and friends. I went back through our 2016 pictures and landed on this picture this morning. As we are...
The Szajnuks and the Undiagnosed Diseases Network (UDN)
Today is the one year mark for us with the Undiagnosed Diseases Network (UDN). Our applications landed on their desk last December, 21st, 2015. We are so very...
“Scuff Mark” by Rachel Nielsen
You can do it, Rachel, I told myself as I visualized sticking the landing of my next skill. Trembling from anticipation, I wobbled, tightening my toes’ grip on...
Open Science Prize: Need your Vote for MyGene2 to win $230k
Please take the time to vote for MyGene2 in the Open Science Prize!! Your vote matters! They are breaking down the silos! They are RUN’s dream! They will publicly share...
Praying for a Christmas Miracle – a diagnosis, treatment & cure: Undiagnosed Diseases Network visit next week
This is a special time of year for holiday fun. This is a time for making gingerbread houses with your classmates and attending your children’s holiday concerts. Unfortunately,...