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The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77
The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77 Posted on Friday, July 10, 2015 · RDLA applauds the House for approving...
Action ALERT: Urge Congress to Vote YES on 21st Century Cures Act
Take Action Action ALERT: Urge Congress to Vote YES on 21st Century Cures Act Calling all Rare Disease Advocates! Take Action: Link to Site This week the House...
Katie Nuffer’s update on living with MHE: Recovery has been very, very difficult.
Katie Nuffer: This recovery has been very, very difficult. But through all of the hard times, I’ve come out stronger and I learned not to take advantage of...
Katie Petersen: My Journey through the Medical Odyssey.
Katie Petersen: My Journey through the Medical Odyssey. My medical problems started around age 16 when I went to my pediatrician with complaints of a rapid heart rate...
Harlie Valdez goes home!!!! Best day ever!!!!
Stephanie Valdez: “I never thought this day would come… They are finally releasing us from the hospital!!! No beeping all night, no sleeping on a small couch or...
Update on Harlie Valdez and her new medicine, Tacrolimus.
Stephanie Valdez: “Update on Harlie. After deciding to try the new medicine Tacrolimus, they are struggling to get the dosage right. They want us to be in the...
In the middle of Iowa, Ava shares her experience with Heaven
Blog from 2015: Ava’s four cranial surgeries were exactly two years ago this week. In 2013, her first cranial surgery was in June. Three more surgeries followed over...
Stephanie Valdez’s Update on Harlie: New medicine and what a great weekend!
Stephanie Valdez: “Update on Harlie.. We have decided to try a new drug treatment called tacrolimus.. She will start it today along with her other treatments on Mondays...
Rare Disease Community Rallies for Infant with Rare Disorder
We are sharing this story here on RUN because we hope that it shows other undiagnosed families that there is a small but very active community of citizens,...
Stephanie Valdez’s Question re: Harlie: Has anyone had any experience with Cytoxan or Tacrolimus?
Stephanie Valdez: “I just wanted to give everyone an update on Harlie’s MRI. Our rheumatologist came in and talked to us yesterday. He wants us to consider a...