Tag: children’s rare diseases

A total of 36 posts are filed under children’s rare diseases
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 imagined it would… Continue Reading
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
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
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
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
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
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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