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“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,...
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...
Hailey Sampsel: Undiagnosed Rare Disease Patient
To have someone say that they don’t know or that they think your pain is all in your head is so hard. You feel like you constantly have...
Josh Forsythe: Father of an Undiagnosed Rare Disease son, Calen
Calen is nearly 16 years old. The only thing he’s been “diagnosed” with is developmental delay and a chromosomal abnormality, the latter which was determined at age 11...
Rachel Nielsen: Undiagnosed Rare Disease Patient
Please don’t write me off or tell me it’s all in my head simply because you don’t have answers for me. I came to the doctor’s because I...
RUN is nominated for a Rare Voice Award from the EveryLife Foundation for Rare Diseases
EveryLife Foundation for Rare Diseases Nominees Federal Advocacy – Congressional Staff Nico Janssen, Legislative Assistant, Office of Senator Maria Cantwell, Lymphedema Treatment Act Molly McDonnell, Senior Health Policy Advisor, Office...
Rare Disease Report: Being Undiagnosed is a Diagnosis (until further noticed)
Please watch: Being Undiagnosed is a Diagnosis (until further noticed) It first viewed on the Rare Disease Report Gina Szajnuk, Co-Founder and Executive Director, Rare and Undiagnosed Network (RUN) talks...
