Recent Posts
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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...
“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...