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Stephanie Valdez on Harlie’s AMAZING progress!

May 28, 2015 2:01 am

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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...

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Scripps Translational Science Institute (STSI) IDIOM: Idiopathic Diseases of Man

May 20, 2015 8:34 pm

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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...

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Betsy Kanarowski on POTS: Not rare, but rarely diagnosed

May 19, 2015 1:49 am

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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...

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Stephanie Valdez’s update on Harlie today. Making Progress!

May 17, 2015 10:38 pm

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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...

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Lineagen’s Understanding Childhood Developmental Disorders page is now LIVE on Facebook

May 14, 2015 10:49 pm

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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...

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21st Century Cures Initiative: Priorities for the Rare Disease Community

May 12, 2015 4:07 pm

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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...

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Tigress Productions: Looking for UK-based people with medical mysteries

May 12, 2015 3:42 pm

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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...

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Stephanie Valdez: Updates us on Mother’s Day

May 10, 2015 4:30 pm

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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...

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The Rare Genomics Institute’s Amplify Hope Initiative: Raising funds for Genetic Sequencing

May 6, 2015 10:54 pm

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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...

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Harlie Valdez: Update by Stephanie last night

May 3, 2015 4:41 pm

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Stephanie: Harlie had a rough week battling her fevers of 102 and vomiting blood. She also had a hard time keeping her oxygen at a safe level. At one...

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