Building awareness and communities to support and find treatments for Rare Diseases
Just as the pink ribbon symbolizes breast cancer awareness, the Blue Denim Genes Ribbon® is a perfect universal sign for rare and genetic disease awareness and helps unify a fractured community of thousands of small diseases who have not had a collective voice. Whether you’re…Continue Reading
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
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