Archive for May, 2015
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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...
Tigress Productions: Looking for UK-based people with medical mysteries
Do you have a medical condition that is proving impossible to diagnose? Have you been through a long series of treatments and finally got a cure? Do you...
Stephanie Valdez: Updates us on Mother’s Day
Help For Harlie added 3 new photos — feeling blessed at Primary Children’s Hospital. First of all I would like to wish all those beautiful amazing women out...
The Rare Genomics Institute’s Amplify Hope Initiative: Raising funds for Genetic Sequencing
Amplify Hope Rare Genomics Institute is inviting patients in need of genetic sequencing to join the Amplify Hope Initiative, a new study to help undiagnosed rare disease patients...