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

Leadership Sponsors

Champion Sponsor

Supporting Sponsor