Establishing a Framework for Regional Coordinated Care
The Coordinated Care Working Group is create systems of coordinated care to enhance knowledge-sharing, expand support networks, reduce access barriers, and improve patient care and well-being—especially in regions without easy access to Specialized Amyloidosis Centers.
Current Focus
The Working Group is currently supporting ARC’s Amyloidosis Project ECHO (Extension for Community Healthcare Outcomes). Project ECHO, developed at the University of New Mexico, is a collaborative learning model for medical education that enables expert healthcare teams to provide best-practice education to non-specialist health care providers through case-based learning and videoconferencing technology. The goal of the Amyloidosis Project ECHO to address disparities and challenges in Amyloid Care Delivery.
Working Group Members
Working Group Co-Chair & ESC Member:
Collen Moffitt, PharmD, MS, US Medical Director, ATTR, Alnylam
Working Group Co-Chair & ESC Member:
Alexandra Haddad, MD, Senior Medical Director, US Rare Cardiology, Pfizer
Alyssa Galloway, Director, Patient Advocacy, Bridge Bio
ESC Member:
Nis Kumar, Global Patient Advocacy Lead, Pfizer
Gabriela Tamariz, Medical Science Liaison, Alnylam
Tina Gerbek, Global Medical Manager, Novo Nordisk
Coordinated Care Working Group Scientific Advisory Board Members
Johana R. Fajardo DNP, NE-BC, ANP-BC, FHFSA
Director Precision Cardiomyopathy Clinical, Director Precision Cardiomyopathy Clinical Services, Advanced Heart Failure and Transplant Nurse Practitioner, Duke University Heart & Vascular Institute
Jose Nativi-Nicolau, MD
Advanced Heart Failure & Transplant Cardiologist, Mayo Clinic- Florida
Johanna Contreras, MD, MSc, FACC, FAHA, FASE, FHFSA
Cardiologist, Mount Sinai Hospital
Ahmad Masri, MD, MS
Associate Professor of Medicine, Division of Cardiovascular Medicine, School of Medicine, Oregon Health & Science University
Ike Okwuosa, MD
Assistant Dean of Medical Education, Associate Professor, Medicine (Cardiology), Northwestern Medicine
Michaela Liedtke, MD
CKD Family Professor, Department of Medicine, Clinical Chief, Division of Hematology, Co-Director Stanford Amyloid Center, Co-Director Stanford Adolescent and Young Adult (SAYAC) Program, Stanford Health Care-Stanford Hospital
Mori Gertz, MD, M.A.C.P.
Consultant, Division of Hematology, Roland Seidler Jr. Professor Department of Medicine , College of Medicine
Mayo Distinguished Clinician
Clinical Assistant
Mayo Clinic- Minnesota
Sabrina Browning, MD
Assistant Professor of Medicine, Section of Hematology/Department of Internal Medicine
Smilow Cancer Hospital/Yale Cancer Center
Yale University School of Medicine
Michael Polydefkis, MD
Associate Professor of Neurology
Johns Hopkins
Yessar Hussain, MD
Neurologist
Austin Neuromuscular Associates
Dianna Quan, MD
Director, Electromyography LaboratoryDirector, Neuromuscular Medicine Fellowship
University of Colorado
Sami L. Khella, MD
Professor of Neurology
Penn Presbyterian Medical Center
University of Pennsylvania School of Medicine
Accomplishments
Encore poster of the 2023 Survey Findings presented at the American Association of Heart Failure Nurses Meeting in Savannah, Georgia
View the poster
AL Amyloidosis specific survey findings presented at the American Society of Clinical Oncology Annual Meeting
View the findings
Poster showcased at the Annual Conference of the International Society of Amyloidosis (ISA) to share the findings from the Best Practices Survey
View the poster
Coordinated Care Group Surveys Best Practices and Barriers at U.S. Specialized Amyloidosis Centers
Other Working Groups
Contact
To learn more please contact Megan Glynn, Senior Program Manager for ASPIRE, at mglynn@arci.org.
