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.
Nuri Aydın konuralp caddesi, 4 nolu aile sağlığı merkezi
Esentepe / Antakya, Hatay
Contact Dr. Suleyman Kus Phone: 0326 214 13 45
UNITED STATES OF AMERICA
National Institutes of Health Clinical Center, Bethesda MD (Washington DC Metropolitan Area):
Contact: Nuria Carrillo, MD
Contact: Kennan Bradley
University of Mass. Memorial Medical Center, Worcester, MA.
Contact: Dr. Lawrence J. Hayward, MD, PhD, Neurology, Neuromuscular Medicine
Brigham and Women's Hospital, Boston, MA.
Contact: Dr. Anthony Amato
Telephone: (617) 732-8046
University of California (UCLA), Los Angeles, California
Contact: Dr. P. Shieh, Clinical Neurology
Telephone: (310) 794-1195
Contact: Genetic Counselor Barbara Crandall
Telephone: (310) 825- 0109
Stanford University, Palo Alto, California
Contact: Dr. Andreas Kogelnik
Telephone: (650) 723-6661
University of California Irvine, Irvine, California
Contact: Dr. Tahseen Mozaffar
Telephone: (714) 456-2332
Places for Genetic Testing:
Cedars-Sinai Medical Genetics Institute, Los Angles, California
HIBM Research Group offers genetic testing for GNEM in Reseda, Califionia.
North Shore University Hospital, Manhasset, New York
SHORE, A Medical geneticist is available to test for comprehensive Sephardic/Mizrachi Jewish genetic disease pre-conception/prenatal, and carrier screening
UCLA Prenatal Diagnosis Center, Los Angeles, California