Many people with amyloidosis spend years seeing doctors, running tests, and being told “everything looks normal.” This session explains why amyloidosis is so hard to diagnose, the red flags that are often overlooked, and what patients and caregivers can do to advocate for the right tests and the right specialists; so answers come sooner, not later.

Dr. Morie Gertz is Roland Seidler Jr. Professor of the Art of Medicine and Chair Emeritus of Internal Medicine at Mayo Clinic Rochester. A world-renowned expert in amyloidosis and plasma cell disorders, he has led clinical research and trials in AL amyloidosis and served in key roles in the International Society of Amyloidosis. He has authored 800+ peer-reviewed publications and received multiple major awards.

Held monthly for newly diagnosed ATTR amyloidosis patients. This is designed as a one-time starter session to help recently diagnosed ATTR patients understand the basics, process what’s happening, and plan next steps. We cover vocabulary, symptoms, treatment categories, and questions for your doctors, plus community resources.

Stacey Goodman, MD completed her hematology training at the NIH and Vanderbilt University before joining the faculty in 1993. She helped create and lead the Vanderbilt Amyloidosis Multidisciplinary Program (VAMP) until her retirement in 2021. She currently serves as a member of the board of directors at the Amyloidosis Foundation.

Managing heart failure medications can be confusing. This session explains how different drugs work together, why dosing and timing matter, and how to monitor results. With proper medication management, your doctor can address symptoms like fatigue that may be caused by medications, the disease itself, or both, helping optimize care and daily functioning.

Daniel Lenihan, MD, Is Director of the Cardio-Oncology Program and Heart Failure Clinic Cape Cardiology, part of the Saint Francis Healthcare System. His areas of interest include early phase clinical trials, amyloidosis, cardiomyopathy and cancer survivorship.

David Gusick is the founder of Somebody To Talk To, a program bringing patients, caregivers, and doctors together for free weekly sessions. With 30+ years in systems architecture and entrepreneurship, he is building a global support model to improve quality of life for rare disease patients.