Community Center
Storytelling is a powerful tool that continuously drives knowledge development and sharing about the patient experience with managing hereditary diseases and…
I was diagnosed as a child with a disease called bronchiectasis. This chronic disease eventually caused my AA amyloidosis which affected my kidneys and eventually…
The Story of Ramona
RARE DISEASE DAY
Living with Autoimmune Neutropenia and AA Amyloidosis
On the occasion of RARE DISEASE DAY I'd like to share a few words about…
Morie A. Gertz, MD, chair, General Internal Medicine, Mayo Clinic Comprehensive Cancer Center, discusses the rationale for the phase 3 AFFIRM-AL trial (NCT04973137…
For several years, CeCe was living with mysterious health challenges. After seeing numerous specialists and being misdiagnosed multiple times, CeCe finally found…
Jean Williams, 65, has been seeing the same primary care physician for years. Perhaps this familiarity afforded her the ease with which to openly discuss her care.…
Jason Valent, MDexternal link, opens in a new tab, Director of the Multiple Myeloma Program and Co-Director of the Amyloidosis Program at Cleveland Clinic Cancer…
In late 2019, Lloyd Smith was suffering with symptoms that were later thought to be COVID-19, although he never had a conclusive test. At the time, the world was…
When Pat Jordan, 65, was officially diagnosed with hereditary ATTR (hATTR) amyloidosis in May 2016, her first thought was, "Well, now I know how I'm going to die."…