Recent Posts
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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...
“There is nothing pretty about dysautonomia” by Brittany Stangley
As hard as this is for me to do, I am going to share with all of how my illness effects my life. I mentioned before that I...
Angel’s Hands Foundation: 15th Annual “Friend Raiser” – Dinner/Auction – October 22
We are so excited to donate a NBA Utah Jazz and NBA Milwaukee Bucks family experience to the Angel’s Hands Foundation’s 15th Annual “Friend Raiser” -Dinner/Auction tonight, October 22th....
“Kind Words” by Doris
Gina I hope you and the family have comfortably settled in and are enjoying the cooler Wisconsin weather. Now that basketball season and school is in full swing,...
Rachel Nielsen: Still Undiagnosed but we received some answers!
Another update! (You guys are probably sick of me by now😅😉🙈) I recently got some results back from a muscle biopsy in Wisconsin and I saw a geneticist...
“Undiagnosed For TWO Years” by Hailey Sampsel
Two years ago, my health journey started and my whole life changed. Instead of my life of competitive tumbling, running track, and being a straight A student. My...
Utah Rare’s Journey
It was an honor to share my journey with Utah Rare at the Global Genes RARE Patient Advocacy Summit along with Sharon King of Taylor’s Tale and the NC Rare Disease Network. The breakout...