Category: Advocacy

ARC-supported consensus best practices guidelines for the diagnosis of cardiac ATTR amyloidosis published in the journal of the American Heart Association, Circulation:Heart Failure. (more…)

I recently had the opportunity to attend this public meeting at the FDA to discuss the Patient Perspectives on the Impact of Rare Diseases. This meeting was held as opportunity to bring the voices of patients and caregivers to the...

Our ARC team of amyloidosis patients, caregivers and ARC staff took part as advocates in key activities during the week of Rare Disease Day, which is held on February 28th each year.  (more…)

Rare disease day takes place on February 28th of each year. The entire week provides a unique opportunity to advocate and raise awareness of key policy issues that affect amyloidosis patients. (more…)

To strengthen patient involvement, the U.S. Food and Drug Administration (FDA) and the Clinical Trials Transformation Initiative (CTTI) announced the launch of the Patient Engagement Collaborative (PEC). (more…)