Patient Focus

May 1, 2019 The Skinner Family - Living with Primary Hyperoxaluria Type 1 Three of the four Skinner children have been diagnosed with primary hyperoxaluria type 1 (PH1). Learn more about their story in this video. Read More ›
February 28, 2019 Meet the 2018 Advocacy for Impact Grants Recipients We are very pleased to announce the 2018-19 Advocacy for Impact Grants recipients and share more information about their initiatives. Advocacy for Impact is... Read More ›
June 19, 2018 Guest Post: Finding Hope in a Potential New Class of Medicines Amyloidosis first entered my husband’s life and my life in the mid-1990s, when we began to care for my uncle who had amyloidosis, a time I call the “dark ages. Read More ›
June 19, 2018 Guest Post: The Heroes Among Us For many of us, it’s unimaginable to think of a daily life filled with intractable pain. It’s also hard to imagine caring for someone in pain of that... Read More ›
February 28, 2018 A Note from Nicole Boice of Global Genes: Hope Is on the Horizon On this Rare Disease Day—and as is the case each year on February 28—I’m reminded of why I founded Global Genes nearly a decade ago. At that time, I was just... Read More ›
July 1, 2017 One Family, Three Generations, One Disease - Living with hATTR Amyloidosis Multiple generations of a family have been impacted by hereditary ATTR (hATTR) amyloidosis. In this video, Ron Sr., his sons Don and Ron Jr., his... Read More ›
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