In conjunction with our research efforts, we are aggressively building awareness of the disease among physicians. Given the high rates of mis-diagnosis and under-diagnosis, education is imperative. Specifically, we are targeting physicians who are treating diseases with similar symptoms, such as prostate cancer. As urinary issues are some of the first to present in APBD patients, urologists may be the first physicians to see these patients and can be the first in line for correct diagnosis and treatment.
Unfortunately, APBD is not yet well known or well understood among urologists, or for that matter, among neurologists and other physicians who may unknowingly treat APBD patients for their symptoms and not the underlying condition. Therefore, we are actively conducting targeted education campaigns at national clinical meetings, comprehensive physician mailings, and continuing education seminars.
The APBDR Foundation is pleased to publish a list of physicians who have self-identified as having knowledge of, or experience with, APBD. The publication of this list by the APBDR Foundation is not intended as, nor does the publication constitute, the recommendation, approval or endorsement, by the APBDR Foundation of any of the physicians whose names appear on the list.
Brent Fogel, MD, PhD
Director, Ataxia and Neurogenetics Biobank Program
Department of Neurology
Program in Neurogenetics
David Geffen School of Medicine University of California, Los Angeles
Charulatha P. Nagar MD
Health system Clinician
Ken And Ruth Davee Dept of Neurology
Northwestern University Feinberg School of Medicine
Gerald Raymond, M.D.
Kennedy Krieger Institute
Johns Hopkins University
Christopher Klein, M.D.
Department of Neurology
Douglas C. Miler, M.D., Ph.D.
Clinical Professor of Pathology and Anatomical Sciences
University of Missouri School of Medicine
New York City
Salvatore DiMauro, M.D.
Professor of Neurology
Director of H. Houston Merritt Clinical Research Center
Columbia University and Columbia Presbyterian Medical Center
Heather A Lau, M.D., M.S.
Assistant Professor, Child Neurology
Director, Lysosomal Storage Disorders Program
Division of Neurogenetics
Department of Neurology, NYU Langone Medical Center
Marvin Natowicz, M.D., Ph.D.
Raphael Schiffmann, M.D.
Director of The Institute of Metabolic Disease
Baylor Research Institute and Baylor University
Berge Minassian, M.D.
The Hospital for Sick Children
Fanny Mochel, M.D.
Department of Genetics
Brain and Spine Institute – Groupe Hospitalier Pitié-Salpêtrière
Alexander Lossos, M.D.
Hadassah Medical Center
Mia Horwitz, Ph.D.
Department of Cell Research & Immunology
Tel Aviv University