Genetic screening is the only way to prevent future generations from being affected by this disease. It is imperative to seek genetic counseling if you are a young adult who is affected, a carrier, or at risk of being a carrier. Taking precaution is especially important prior to starting a family.
Due to advancements in technology, two carriers can now conceive a healthy child. Please discuss your reproductive options with your physician, who can then refer you to a genetic counselor. Genetic screening for GNE Myopathy is easy and requires only a quick and painless cheek swab.
NDF is proud to partner with the Jewish Genetic Disease Prevention Project to bring you low-cost screening to Los Angeles.
Find Doctors and Clinics Familiar with GNE Myopathy:
McMaster University Health Centre in Hamilton, Ontario in Canada.
Contact: Dr. Mark Tarnopolsky
Department of Neurosciences, AIIMS, New DelhI
Department of Neurology, NIMHANS, Bangalore, India
Contact: Prof. A. Nalini, Head
Department of Neurology , Grant Medical College and Sir JJ Group of Hospitals, Mumbai.
Contact: Satish Khadilkar
Phone +91(022) 22072489, 24142855
DNA Diagnostics of GNE Myopathy
Dr. Hossein Khademian, Tehran. Via UCLA
Catholic University, Rome
Contact: Dr. Massimiliano Mirabella and Dr. Aldobrando Broccolini
Istituto Neurologico Carlo Besta
Contact: Dr. Barbara Pasanisi
SAUDI ARABIA, KINGDOM
Dr. Alshehri Ali
King Abdulaziz Medical City
Dr. Mohammed Al Jumah
Dr. Edward J. Cupler
Consultant at KFSHRC-Jeddah
Academisch Medisch Centrum, the Netherlands.
Contact: Professor de Visser: 020 - 566 - 3442.
UNITED STATES OF AMERICA
University of Mass. Memorial Medical Center, Worcester, MA.
Brigham and Women's Hospital, Boston, MA.
Contact: Dr. Lawrence J. Hayward, MD, PhD, Neurology, Neuromuscular Medicine Telephone: 508-334-2527
University of Caifornia (UCLA), Los Angeles, California.
Contact: Dr. Anthony Amato,
Contact: Dr. P. Shieh, Clinical Neurology
Telephone: (310) 794-1195
Contact: Genetic Counselor Barbara Crandall
Telephone: (310) 825- 0109
Contact: Dr. Andreas Kogelnik
Telephone: (650) 723-6661
University of California Irvine, California
Contact: Dr. Tahseen Mozaffar
Telephone: (714) 456-2332
Places for Genetic Testing:
Cedars-Sinai Medical Genetics Istitute, Los Angles, California
HIBM Research Group offers genetic testing for GNEM in Reseda, Califionia.
North Shore University Hospital, Manhasset, New York
UCLA Prenatal Diagnosis Center, Los Angeles, California