Archive for September, 2016
Rachel Nielsen and Calen Forsythe: Prayers Needed
We have had a long day of negotiating between the University of Utah Hospital and Intermountain Primary Children’s Hospital for Rachel’s care today. She has two amazing doctors...
Global Genes: RARE Champion of Hope – Advocacy: Gina Szajnuk
“Over 350 individuals and organizations worldwide were nominated by their peers for a RARE Champion of Hope award for their notable efforts in rare disease advocacy, science, collaborative...
Rachel Nielsen: H.O.P.E (hold on, pain ends)
I’ve found that having a chronic illness is much like losing someone very close to you. People will say they understand your pain, they’ll tell stories about how...
MyGene2: Offering whole exome sequencing directly to families. Apply now!
MyGene2 is currently offering $825 for CLIA-certified whole exome sequencing (WES) right now! This is an incredible opportunity for families with a rare or undiagnosed disease! You will...
AllTrials is gathering stories of patients!
AllTrials is a non-profit focused on raising awareness of the tremendous need for higher standards in reporting all results of clinical research trials. Patients’ voices are incredibly important in this movement,...
We’re Partnering With The Mighty!
Rare Disease | The Mighty Partnership | Rare & Undiagnosed Network We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s...