Patient Advocacy

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 ›