Join Us on Rare Disease Day & Shine a Light on Amyloidosis
Rare Disease Day takes place every year on Feb 28. The many events that take place all month long provide a unique opportunity to raise awareness and advocate for key policy issues that affect amyloidosis patients. As rare diseases take...
ARC Launches HTA Toolkit for Patient Advocates
ARC has published a Health Technology Assessment Toolkit to equip patients and patient groups within Europe, as well as globally, with the tools to advocate on behalf of themselves and other patients for access to new treatments. (more…)
Publication of cardiac ATTR amyloidosis diagnosis guidelines
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…)
Patient Perspectives from the FDA Public Meeting: the Impact of Rare Diseases
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...
ARC’s Advocates work Capitol Hill
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…)