American Kidney Fund Convenes Leading Experts and Patients to Address Unknown Causes of Kidney Disease


Renowned researchers, professional organizations, allied health organizations, advocacy organizations and patients are participating in AKF’s Summit to chart a path forward

ROCKVILLE, Md. (November 18, 2020)—The American Kidney Fund (AKF) today announced a first-of-its-kind initiative, the Unknown Causes of Kidney Disease Summit, to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes. The Summit will take place virtually on Tuesday, Dec. 1, 2020.

AKF’s Unknown Causes of Kidney Disease Summit will bring 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, hear directly from affected patients, identify barriers to progress, and develop a plan for a path forward to address this serious issue in nephrology. The Summit is made possible with generous funding from our Leadership Sponsors Natera, Otsuka America Pharmaceutical, Inc., Sanofi Genzyme, and Vertex Pharmaceuticals Incorporated, our Champion Sponsor Alexion Pharmaceuticals, and our Supporting Sponsor Travere Therapeutics, Inc.

While diabetes and hypertension are the two main causes of kidney failure, many other conditions can affect the kidneys and have serious health implications for patients. In many cases, kidney failure may be caused by a rare, genetic disease, putting family members at risk as well. If the cause of kidney failure is not accurately diagnosed, patients can experience serious consequences: delayed treatment, additional comorbidities, and even the loss of a transplanted kidney.

 “Too many people crash into late-stage kidney disease or complete kidney failure without ever knowing the cause. In some cases, these patients may receive a kidney transplant but later lose the transplant because of an underlying condition that is attacking the kidneys—this is nothing short of tragic,” said LaVarne A. Burton, AKF president and CEO. “In other cases of misdiagnosis, multiple family members experience kidney failure before realizing there is a genetic cause. We’re grateful to the researchers, organizations and patients committing to work with us on this life-saving, unprecedented initiative.”

AKF has appointed a national steering committee to lead this initiative. The steering committee will spearhead the publication of a white paper from the Summit participants’ insights, with the goal of producing an actionable path forward. The committee will also form post-Summit working groups to advance solutions uncovered during the Summit. Committee members are:

  • David Baron, Ph.D.: Diagnosed with autosomal dominant polycystic kidney disease (ADPKD) in his 40s, Dr. Baron is a research scientist who has worked in academia at the Medical University of South Carolina, had a career in the pharmaceutical industry, and served as chief science officer for the PKD Foundation. 
  • Ali Gharavi, M.D.: A leading kidney disease researcher, Dr. Gharavi is chief of the division of nephrology at New York-Presbyterian/Columbia University Medical Center, working to bring personalized genomic nephrology from the laboratory into patient care.
  • Kevin Ho, M.D.: Serving as medical director for U.S. medical affairs for rare diseases and rare kidney diseases at Sanofi Genzyme, Dr. Ho works to improve care outcomes for chronic kidney disease (CKD) and end-stage renal disease (ESRD) patients.
  • Jack Johnson: As a Fabry disease patient and executive director and co-founder of the Fabry Support and Information Group, Johnson has spent more than two decades expanding understanding of this rare condition and improving the lives of patients living with Fabry disease.
  • Anna Köttgen, M.D.: A medical doctor and epidemiologist, Dr. Köttgen is head of the Institute of Genetic Epidemiology at the University of Freiburg (Germany) and is known worldwide for her expertise in the field of kidney disease genetics and complex renal and metabolic diseases.
  • Trudy McKanna, M.S.: A board-certified genetic counselor with over 20 years of experience in prenatal, pediatric, and laboratory genetic counseling, McKanna is director of medical education for transplant and renal genetics at Natera, where she works to enhance provider and patient education.
  • Silas Norman, M.D: A member of AKF’s National Board of Trustees, Dr. Norman is a transplant nephrologist at University of Michigan Division of Nephrology. Dr. Norman is deeply involved in providing greater access to kidney transplants, particularly in medically underserved communities.
  • Julie Wright Nunes, M.D., MPH: AKF’s Chair of Medical Affairs and a member of AKF’s National Board of Trustees, Dr. Nunes is a physician scientist at the University of Michigan Division of Nephrology. In her role, Dr. Nunes works with patient-focused research at the forefront of patient and provider communication, patient health literacy, provider literacy and creating interventions that support patients learning about kidney disease, and what to do following a diagnosis of the disease.

“Kidney disease of unknown etiology is a very common condition, presenting a frustrating challenge for patients and clinicians,” said steering committee member Dr. Gharavi. “This initiative is an exceptional endeavor, bringing together leading experts and advocates to chart a path forward that addresses critical science and clinical questions. “

Organizations currently confirmed as Summit participants include: Alexion Pharmaceuticals, Alport Syndrome Foundation, American Association of Kidney Patients, American Nephrology Nurses Association, American Society of Nephrology, Arbor Research Collaborative for Health, Atypical HUS Foundation, Beth Israel Deaconess Medical Center, Centers for Medicare and Medicaid Services, Chi Eta Phi Sorority, Inc., Dialysis Patient Citizens, Fabry Support and Information Group, IgAN Foundation, ICAHN School of Medicine at Mount Sinai (TANGO Study), International Society of Nephrology, Kidney Disease: Improving Global Outcomes, Natera, National Minority Organ Transplant Education Program, National Institute of Diabetes and Digestive and Kidney Diseases, National Kidney Foundation, National Medical Association, National Organization for Rare Disorders, National Society of Genetic Counselors, NephCure Kidney International, NewYork-Presbyterian/Columbia University Medical Center, Otsuka America Pharmaceutical, Inc., Oxalosis & Hyperoxaluria Foundation, Polycystic Kidney Disease Foundation, Renal Pathology Society, Renal Physicians Association, Sanofi Genzyme, University of Freiburg (Germany), University of Michigan Department of Internal Medicine, University of Michigan Division of Nephrology, University of Michigan Medical School (NEPTUNE Consortium), Vertex Pharmaceuticals, Inc., and the Veterans Health Administration.

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF.  AKF is one of the nation’s top-rated nonprofits, investing 97 cents of every donated dollar in programs, and holds the highest 4-Star rating from Charity Navigator and the Platinum Seal of Transparency from GuideStar.

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