In this guest blog post submitted by Mackenzie Boedicker and her mother, Deb, we share the story of one woman’s mission to alleviate the struggles for those who live with amyloidosis. Mackenzie was diagnosed in 2017 and is doing well as a full-time research assistance and founder of a… Read More
Washington, D.C., May 30, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Hereditary Sensory Autonomic Neuropathy Type 1E (HSAN1E). This new resource is available free online to individuals around the… Read More
Vanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy… Read More