Advocating for Amyloidosis Patients & Families at the US Congress
ARC participated in the 2023 Rare Disease Week proceedings organized by the EveryLife Foundation alongside five amyloidosis patient and family advocates and over 600 other rare disease advocates. [caption id="attachment_6173" align="aligncenter" width="900"] Amyloidosis patient advocates and ARC staff with other...
ARC & ASPIRE: Partnerships for Patient-Centric Change
Earlier this month ARC announced the launch of ASPIRE: Amyloidosis Stakeholder Partnerships for Impact, Reach, & Equity. This initiative, independently facilitated and governed by ARC, brings together 10 different biotech & pharmaceutical companies committed to making a real impact in...
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…)