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Tag: children’s rare diseases

A total of 36 posts are filed under children’s rare diseases
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Rare Pictures of Hope™ – Submit Your Hope Stories and Photos Today!
When one of our parent advocates re-posted a picture she found with our slogan, “Hope. It’s In My Genes!” we never… Continue Reading
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Spooner Family Searches For Diagnosis For Daughters Rare Disease
Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising… Continue Reading
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CNN Health – Mom claims in viral blog that disabled child denied transplant
(CNN) — Can a patient be rejected for a kidney transplant based on a developmental disability? A New Jersey mother alleges in her blog… Continue Reading
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Improving Drugs and Biologics for Children – Washington DC Briefing
The laws named the Best Pharmaceuticals for Children Act and Pediatric Research Equity Act, or BPCA/PREA, have resulted in over 400 drug… Continue Reading
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Costs of Caring for Children with Rare Disease: Online Survey
The daily routines of those who care for children with rare genetic diseases are challenging.  In his new book, “The Boy in the Moon,”… Continue Reading
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Brad Paisley Lends Voice to New Song "Hard Life" to benefit A-T Children’s Project
Brad Paisley sings new song written by Joe Kindregan, A-T patient BRAD PAISLEY LENDS VOICE TO NEW SONG “HARD LIFE” Written By Joe… Continue Reading
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Enter to win an iPod Touch through the EveryLife Art Contest!
Easy to enter! Just upload a photo of your art on RareArtist.org and you could win an iPod Touch! We accept art in all forms: Painting… Continue Reading
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