Category: Patient Support
Announcing our Educational Booklet Series!
Quality and reliable information has always been a focus of the Amyloidosis Research Consortium (ARC). When patients are first diagnosed, it’s hard to know where to turn to learn about your options and what may lie ahead. (more…)
Coronavirus: What Amyloidosis Patients Should Know
With the rise in cases of COVID-19, and the risks posed to some amyloidosis patients, ARC is monitoring recommendations and resources. (more…)
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…)
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...
New MAP Feature: Treatment Center Comparator
Finding the best amyloidosis care is not easy, so in 2017 ARC created My Amyloidosis Pathfinder (MAP) to help you discover, learn about, and contact treatment centers and clinical trials that are right for you. Now MAP can do even more. (more…)