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June 17, 2019

FOX 5 NY – BRAVE GIRL INSPIRES RESEARCH ON RARE CHROMOSOMAL DISORDER | THE BIG IDEA

Article By Teresa Priolo, FOX 5 NY Karina Shah, 6, has a song in her heart and a beat in…

April 11, 2019

PHARMAFILE – LIVING WITH A RARE CHROMOSOME DISORDER

Rebecca Pender’s daughter Hannah lives with the ultra-rare condition Inv Dup Del 8p, a genetic arrangement that affects just 80…

March 13, 2019

PENINSULA NEWS – ROLLING HILLS ESTATES MOM SEEKS CURE FOR 6-YEAR-OLD WITH RARE DISORDER THAT AFFLICTS JUST 1 IN 65 IN THE WORLD

Article By Bradley Bermont The first sign of trouble was her newborn’s faint cry. “In my mind, I’m thinking that’s…

March 8, 2019

WEATHERFORD DEMOCRAT – WEATHERFORD FAMILY HOPES TO TRAVEL TO NY FOR RARE DISORDER CONFERENCE

Article By Madelyn Edwards news@weatherforddemocrat.com When doctors diagnosed Shelby Prewett with chromosome 8 disorder at age 4, the information they…

February 7, 2019

ROMPER – DENISE RICHARDS OPENS UP ABOUT RAISING HER DAUGHTER WITH SPECIAL NEEDS & IT’S NOT ALWAYS EASY

Article By Christina Montoya Fiedler Many people know Denise Richards from her rocky relationship with actor Charlie Sheen. For a…

September 16, 2015

EVENING TIMES – JEANS FOR GENES PROVIDES THEIR HELP TO UNIQUE HANNAH

JEANS for Genes Day on September 18 will raise vital funds for children with genetic disorders in the UK. And…

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