Disease Awareness/Support
Mary O'Donnell is President/CEO at Amyloidosis Foundation. She has been a project manager at PAC Project Advisors from 1995 to 2005, where she managed multi-million…
Julia earned her MS in Genetic Counseling from UC Irvine in 2007 and was certified by the American Board of Genetic Counseling (ABGC) in 2009. She is a Genetic…
Every medical case, to paraphrase the writer Viet Thanh Nguyen, is lived twice: once in the wards and once in memory. Some of what follows is still intensely vivid…
The Society for Cardiovascular Magnetic Resonance (SCMR), a Society dedicated to improving cardiovascular health by advancing the field of cardiovascular magnetic…
This is a non-fiction book that tells how I beat an incurable, terminal disease known as amyloidosis. Amyloidosis turned my heart, literally and figuratively, into…
Presented in diary format, 'Beating Back AL Amyloidosis' takes the reader through the changes in Rachelle's health as Light Chain Amyloidosis gradually manifested…
It is now nearly four years since my husband, Doug, was diagnosed with an extremely rare disease called Amyloidosis.
It came out of the blue, though we now…
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and…
The term 'amyloidosis' is a general term used for a group of diseases where an abnormal protein, called amyloid, accumulates in the tissues. The build-up of amyloid…