About the Unknown Causes of Kidney Disease Summit
Every person living with kidney failure deserves to know what caused it, but there may be a significant percentage of people who do not have a definitive diagnosis for the root cause of their kidney failure. Many cases are caused by rare diseases or congenital conditions—and these too often go undiagnosed. Undiagnosed or misdiagnosed kidney disease has major ramifications for patient care and outcomes.
The American Kidney Fund’s Unknown Causes of Kidney Disease Summit brings together medical leaders, patient advocates, and academic and industry researchers to identify how the kidney community can drive innovation in research, diagnosis and treatment of the underlying causes of kidney disease. Summit participants will review the research on this subject, discuss other available or potential data sets, identify any barriers to progress, and develop a plan for a path forward to address this serious issue in nephrology.
Date: Tuesday, December 1, 2020
Time: 12:00-4:30 PM ET
Steering Committee:
David Baron, Ph.D.
PKD Science Consultant
Former Chief Scientific Officer, PKD Foundation
Ali Gharavi, M.D.
Chief, Division of Nephrology
Member, Institute for Genomic Medicine
New York-Presbyterian/ Columbia University Medical Center
Kevin Ho, M.D.
Medical Director, US Medical Affairs- Rare Diseases
Sanofi Genzyme
Jack Johnson
Executive Director and Co-Founder
Fabry Support and Information Group
Anna Köttgen, M.D., MPH
Director, Institute of Genetic Epidemiology
University of Freiburg, Germany
Trudy McKanna, M.S.
Director, Medical Education- Transplant and Renal Genetics
Natera
Silas Norman, M.D., MPH
Associate Professor, University of Michigan Division of Nephrology
Vice Chair of Medical Affairs Committee, American Kidney Fund
Julie Wright Nunes, M.D., MPH
Associate Professor, University of Michigan Department of Internal Medicine
Chair of Medical Affairs Committee, American Kidney Fund
Presenters:
Dr. Ali Gharavi
Chief, Division of Nephrology
Member, Institute for Genomic Medicine
New York-Presbyterian/ Columbia University Medical Center
Dr. Martin Pollak
Chief, Division of Nephrology and Director, Pollak Lab
Beth Israel Deaconess Medical Center
Patient/Caregiver Advocates:
Amanda Goldstein
Shayla Harris
Deanna Nicole Hunt
Paul Rakoski
Summit Participants:
Alexion Pharmaceuticals, Inc.
John Viel, PhD- Senior Medical Director, Nephrology
Alport Syndrome Foundation
Kevin Schnurr- Dir. of Communications and Patient Engagement
American Association of Kidney Patients
Richard Knight- President
American Nephrology Nurses Association
Debra Hain, PhD APRN AGPCNP-BC FAAN FAANP FNKF- Fellow
American Society of Nephrology
Susan Stark- Acting VP, Excellence in Patient Care
Ronald Falk, MD, FASN- Past President
Arbor Research Collaborative for Health
Alan Leichtman, MD- Sr. Research Scientist
Atypical HUS Foundation
David Deffenbaugh- Executive Director
Centers for Medicare & Medicaid Services
Jesse Roach, MD- Nephrologist, Medical Officer, Center for Clinical Standards and Quality
Chi Eta Phi Sorority, Inc.
Angela Jourdain, Dr. PH., MSN, RN, CCRN, NEA-BC - Past President
Stacey Johnson, DNP, MSN, BSN, RN, CCM- Assistant Regional Director
Dialysis Patient Citizens
Kathi Niccum, EdD- Education Director
IgA Nephropathy Foundation of America, Inc.
Bonnie Schneider- Founder and Director
ICAHN School of Medicine at Mount Sinai
Paolo Cravedi, MD, PhD- Principal Investigator, the TANGO Study, Cravedi Laboratory
International Society of Nephrology
Shuchi Anand, MD, MS- Board Member, Director of the Center for Tubulointerstitial Kidney Disease at Stanford University
Kidney Disease: Improving Global Outcomes (KDIGO)
John Davis- CEO
National Institute of Diabetes, Digestive and Kidney Diseases
Ivonne Schulman, MD- Program Director, Division of Kidney, Urologic and Hematologic Diseases
National Kidney Foundation
Jennifer St. Clair Russell, PhD, MSEd, MCHES- Sr. VP Education and Programs
National Medical Association
Oliver Brooks, MD- Immediate Past President
National Minority Organ Transplant Education Program (MOTTEP)
Clive Callender, MD- President and Founder
National Organization for Rare Disorders (NORD)
Alicia Lawrence, LMSW- Patient Services Case Manager
National Society of Genetic Counselors
Gillian Hooker, Phd, ScM- President
NephCure Kidney International
Kristen Hood, MSN, RN- Director Clinical Outreach
Otsuka America Pharmaceutical, Inc.
Charlotte Jones-Burton, MD, MS- VP, Global Clinical Development, Nephrology
Oxalosis & Hyperoxaluria Foundation
Kim Hollander- Executive Director
Polycystic Kidney Disease Foundation
Chris Rusconi, PhD- Chief Research Officer
Renal Pathology Society
Jeffrey Hodgin, MD, PhD- Board of Advisors
Renal Physicians Association
Naveed Masani, MD- Vice Chair, Clinical Practice Committee
Amy Beckrich, CAE- Project Director
U.S. Veterans Affairs
Susan Crowley, MD, MBA, FASN- National Program Director for Kidney Disease and Dialysis
Deborah Hartzfeld- Lead Genetic Counselor, Genomic Medicine Service
University of Michigan
Alan Leichtman, MD- Professor Emeritus, Department of Medicine, Division of Nephrology
University of Michigan Medical School
Laura Heyns Mariani, MD- NEPTUNE Nephrotic Syndrome Study Network
Assistant Professor, Internal Medicine/Nephrology
Vertex Pharmaceuticals, Inc.
Ogo Egbuna, MD- Sr. Medical Director
