Global Genes

Lisa with Adrenal Cortex Carcinoma, “I Had to Fight for My Treatment Plan.”
I was 35 years old when I was diagnosed with Adrenal Cortex Carcinoma–stage IV, metastasized to the lungs. I was recently divorced, a… Continue Reading
A Visit With a Princess: Alana with XLH
Story by Betsy Landin Last night was rough. I had just gotten back to my parents house in Orlando from Clearwater, Florida after a… Continue Reading
Global Developmental Delays in Preston Leads to Birk-Barel Syndrome Diagnosis
Preston Kelley was born December 27, 2013. He spent the first three months of his life in the NICU at Children’s Hospital of Orange County… Continue Reading
Celebrities and Rare Disease Community Turn Out To Support Global Genes Project’s 1st Annual “Tribute to Champions of Hope” Benefit
Rare Disease Industry Leaders and Advocates Honored; Recording Artists Chris Mann, Katrina Parker and Elliott Yamin Gave Touching… Continue Reading
Kauffman Foundation To Screen “HERE. US. NOW.” Documentary at Harmony Gold Theater In Los Angeles
Foundation Commissioned Emmy Award-Winning Filmmaker Rudy Poe to Chronicle Challenges in Medical System Facing a Family Battling a Fatal… Continue Reading
Recording Artist Elliott Yamin to Duet With Singer-Songwriter and Rare Disease Patient Gracie Van Brunt at Global Genes | RARE Project Benefit
Faircraft Records/Universal Republic Recording Artist Chris Mann and Singer-Songwriter Katrina Parker Will Also Perform; Actors Jason… Continue Reading
Man with Caroli Disease in the Philippines Needs Immiment Liver Transplant But it Will Take 20 Years to Save Funds for Surgery
Five years ago, when my husband Armel was 29, he started having recurrent cholangitis and other symptoms related to liver problems.… Continue Reading
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