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Stephanie Valdez: We are eternally grateful to all of you…
Stephanie Valdez: “Good evening, I just wanted to give an update on Harlie…. It’s been a busy week for her! She’s been working hard in therapy and it’s...
Szajnuk’s family photo. June 2nd, 2013. What has changed since then?
Today is June 2nd, 2015. The family picture we always use is now two years old. What has changed in the last two years? Ava had no idea...
Much better than a hospital room!
Harlie Valdez and Ava Szajnuk enjoy a night out together: This past Saturday night was a great night at The National Ability Center’s Barn Party. For Harlie, it...
Harlie’s cousin: Keely Valdez’s Article on RUN for her school newspaper
Rare and Undiagnosed Network By Keely Valdez A once healthy child who may have done sports or stayed active, had a great sense of humor, or who was...
Stephanie Valdez on Harlie’s AMAZING progress!
Stephanie Valdez: “Just wanted to give everyone an update on Harlie’s AMAZING progress. She had a crazy, busy week last week with her schedule of therapies. She is...
Scripps Translational Science Institute (STSI) IDIOM: Idiopathic Diseases of Man
IDIOM: Idiopathic Diseases of Man At the Scripps Translational Science Institute (STSI) we are focused on an individualized approach to medicine. Currently, we are investigating rare and severe...
Betsy Kanarowski on POTS: Not rare, but rarely diagnosed
Betsy Kanarowski: “Gina asked me to write about the experience of my daughter, Alexa, being undiagnosed. I found myself putting this task off, not because I didn’t want...
Stephanie Valdez’s update on Harlie today. Making Progress!
Stephanie Valdez: “She’s been getting strong this week and working really hard in all of her therapies. She was able to walk 10 feet with assistance, and laid...
Lineagen’s Understanding Childhood Developmental Disorders page is now LIVE on Facebook
Lineagen’s Understanding Childhood Developmental Disorders page is now LIVE on Facebook Link to Understanding Childhood Developmental Disorders: Short Description This community serves as a hub of encouragement, education and meaningful...
21st Century Cures Initiative: Priorities for the Rare Disease Community
Link: Rare Disease Congressional Caucus Briefing – 21st Century Cures Initiative: Priorities for the Rare Disease Community Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs: Representatives...