The Amyloidosis Forum

Formed in 2019, The Amyloidosis Forum has been developed through a public-private partnership between the Amyloidosis Research Consortium (ARC) and the US Food and Drug Administration (FDA). The overarching goal of the Forum is to optimize innovation and accelerate the advancement of new therapeutics by addressing scientific gaps and needs through the conduct of mutually beneficial scientific activities in the pre-competitive domain.

Public Private Partnership with FDA

PPPs and Precompetitive Research

A public–private partnership (PPP) is a cooperative arrangement between two or more public and private sectors, typically of a long-term nature. In 2019, a PPP was formed between the nonprofit Amyloidosis Research Consortium (ARC) and the US Food and Drug Administration (FDA) Center for Drug Evaluation and Research (CDER). The goal of this PPP is to identify and bridge the scientific gaps that are acting as barriers to drug discovery and development for the treatment of AL amyloidosis. The PPP seeks to leverage expertise and resources of all stakeholders (academia, industry, patients, and regulatory agencies) for the conduct of mutually beneficial scientific activities in the precompetitive domain to support bringing new, safe and efficacious therapies to patients with AL and ATTR amyloidosis.

Steering Committee

Angela Dispenzieri, MD

Consultant, Division of Hematology; Serene: M. and Frances C. During Professor of Medicine and of Laboratory Medicine and Pathology; Hematology Research Chair, Mayo Clinic College of Medicine

Isabelle Lousada

Founder and CEO, Amyloidosis Research Consortium

James Signorovitch, PhD

Managing Principal; Health Economics and Outcomes Research, Epidemiology and Biostatistics, Analysis Group, Inc.

Kristen Hsu

Executive Director of Research, Amyloidosis Research Consortium

Mathew S. Maurer, MD

Arnold and Arlene Goldstein Professor of Cardiology and Professor of Medicine, New York-Presbyterian Hospital/Columbia University Medical Center

Preston Dunnmon, MD, MBA, FACP, FACC

Vice President, Janssen R&D Data Sciences, Cardiovascular/Metabolic & Pulmonary Hypertension; Former Medical Team Leader (acting) in the Division of Cardiology and Nephrology, CDER, U.S. Food and Drug Administration

Rosalyn Adigun, MD, PharmD

Medical Officer, Division of Cardiology and Nephrology, U.S. Food and Drug Administration

Sarah Cairns-Smith, PhD, MBA

Chairman, Amyloidosis Research Consortium; Senior Advisor, Boston Consulting Group

Vaishali Sanchorawala, MD

Professor of Medicine and Director, Amyloidosis Center, Boston University School of Medicine and Boston Medical Center

The Amyloidosis Research Consortium

The Amyloidosis Research Consortium (ARC) is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of amyloid diseases. ARC’s mission is to improve and extend the lives of those with amyloidosis. ARC is committed to collaborative efforts that accelerate the pace of discovery, expand patient access to the most effective care, and improve short- and long-term outcomes. Working with partners in industry, government, and academia, ARC seeks to spark innovation and to bring promising treatments from labs to clinics. ARC’s outreach and education inform and empower patients, families, caregivers, physicians, and researchers.

Visit the ARC Website

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