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Patient Stories

Saving Eliza

I’m honored to be speaking at the NORD Breakthrough Summit on Rare Diseases and Orphan Products in October.   Social media, as I continue to learn more every day, is an always changing, rapidly moving,… Read More

Life is a Special Occasion

Alena Galan is a happy 16-year old girl full of life and wise beyond her years. She can light up a room with her quick-witted charm and energetic personality. She loves to sing, dance,… Read More

Multiple Endocrine Neoplasia Type 1: One Family’s Fight

Vanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her family who received the… Read More

Taking Action for ACD

On February 20th, 2013, Eliza and John Rista of Huntersville, North Carolina were blessed with an uncomplicated pregnancy, and a healthy, full-term baby boy weighing 8 pounds and 6 ounces. “Around midnight on the… Read More

Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart this September

Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17. A gifted basketball player, Dorien had no warning signs of an underlying heart condition. Upon autopsy, Dorien was… Read More