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 have the effect that it did. There have been more than 700 photos posted to Facebook leading up to World Rare […]

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 three beautiful children. Despite achieving success in operating their loan company, the Spooner’s have faced greater challenges and discovered even greater meaning […]

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 that this happened to her 3-year-old daughter, and it has sparked an Internet uproar. Whether a person with a mental disability […]

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 labels. Be sure to check out the speakers at this event sponsored by BIO.

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,” Ian Brown describes his personal struggle to cope with his son’s diagnosis of cardiofaciocutaneous syndrome. Brown details how he learned to communicate […]

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 Kindregan To Benefit A-T Children’s Project NASHVILLE, Tenn.  (Dec. 12, 2011)  Brad Paisley has just recorded a new song, “Hard Life,” available for […]

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 Photography Mixed Media Collages Pottery Sculptures PRIZES:  Two Grand Prizes will be awarded in each age group: Children 5-11:   […]