Archive for October, 2016
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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...
“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,...