Patient Focus
June 21, 2019
Alnylam Launches PH1 of a Kind - An Animated Video Series for Kids with PH1
Yesterday, at the OHF International Hyperoxaluria Workshop in Boston, Alnylam previewed PH1 of a Kind, a new animated video series for children about living...
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May 12, 2019
Ania (UK) - Living with Acute Intermittent Porphyria (AIP)
Ania from the UK is living with acute intermittent porphyria (AIP), a type of acute hepatic porphyria (AHP). In this video, she shares her story and thoughts...
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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.
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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.
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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...
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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...
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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...
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