The Inflation Reduction Act: The Devil is in the Details for Patients with Rare Diseases
David Gibson, PhD, CMPP Director of Strategic Programs, Engagement, and Communications Amyloidosis Research Consortium The Inflation Reduction Act (IRA), signed into law on August 16, 2022, tackled a wide range of issues from tax reform, energy security, environmental and...
Forging the Path to a Cure
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FDA Issues Complete Response Letter for Patisiran for Treatment of Cardiomyopathy of ATTR Amyloidosis
BREAKING NEWS: The U.S. Food and Drug Administration has issued a complete response letter for Alnylam Pharmaceuticals' Patisiran, an investigational RNAi therapeutic for the treatment of the cardiomyopathy of transthyretin-mediated (ATTR) amyloidosis. This letter denies approval for the treatment of...
NIH Funds First Step Towards Advancing ATTR Amyloidosis Drug Development
The NIH has awarded the Amyloidosis Research Consortium $40,000 to support the organization's Amyloidosis Forum meeting on "Advancing Drug Development in ATTR Amyloidosis in an Evolving Treatment Landscape." Formed in 2019, The Amyloidosis Forum (https://amyloidosisforum.org) has been developed through a...
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...