Building awareness and communities to support and find treatments for Rare Diseases
Perla Portillo is a mom on a mission. Along with her husband, Jorge, the couple hosted an event in honor of their oldest daughter, Alanis. She is a beautiful 13 year old girl who has a rare, genetic disorder. “We still don’t have a proper…Continue Reading
This World Rare Disease Day, Global Genes, a leading rare disease patient advocacy organization, is proud to debut the new film, Finding Hope: A Rare Disease Community Comes Together. This documentary chronicles the aHUS Orlando Adventure, a first-of-its-kind national child and teen meeting for this rare disease…Continue Reading
On February 28, World Rare Disease Day, Noah Coughlan set out on a 3,100 mile run across America from New York City to San Diego’s Ocean Beach. The goal was to raise awareness for rare diseases. On July 4, right on schedule, he finished his…Continue Reading
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