Category: Patient Stories
Join Us on Rare Disease Day & Shine a Light on Amyloidosis
Rare Disease Day takes place every year on Feb 28. The many events that take place all month long provide a unique opportunity to raise awareness and advocate for key policy issues that affect amyloidosis patients. As rare diseases take...
A Journey of Introspection and Waiting: Part 2
Stephanie Ayars’ family was forever changed after her dad received the news that he had hereditary amyloidosis. In our first post of a two-part series, Stephanie shared her dad’s story from diagnosis to organ transplants, and what led her to...
A Journey of Introspection and Waiting: Part 1
Stephanie Ayars’ life and her father’s were forever changed by hereditary amyloidosis. Here, in the first of a two-part post, she shares their stories: I’d like you to meet my dad, Paul. I’m sharing some photos taken over the decades,...