Get Screened
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:
BELGUIM:
CANADA
McMaster University Health Centre in Hamilton, Ontario in Canada.
Contact: Dr. Mark Tarnopolsky
CHINA
First Teaching Hospital of Beijing University, Beijing
Contact: Dr. Wang Zhaoxia
FRANCE
National Health and Medical Research Institute.
Contact: Dr. Nicolas Levy, Marseille,
Centre de Réfénce Neuromosculaire GNMH Hôpital Marin – APHP.
Contact: Dr. J. Andoni Urtizberea, Hendaye,
GERMANY
Fredrich Bauer Institute, Munich.
Contact: Dr. Sabine Krause
Friedrich Bauer Institute, Laboratory for Molucular Myology, Munich.
INDIA
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
IRAN
Dr. Hossein Khademian, Tehran. Via UCLA
Contact
ISRAEL
Hadassah Hospital, Jerusalem.
Contact: Dr. Stella Mitrani-Rosenbaum,
ITALY
Catholic University, Rome
Contact: Dr. Massimiliano Mirabella and Dr. Aldobrando Broccolini
Istituto Neurologico Carlo Besta
Contact: Dr. Barbara Pasanisi
JAPAN
National Center for Neurology and Psychiatry,Tokyo.
Contact: Dr. Ichizo Nishino,
KOREA
Pusan National University Yangsan Hospital, Yangsan.
Contact: Dr.Dae-Seong Kim,
Contact: Dr. Jin-Hong Shin
Gangnam Severance Hospital, Seoul, Korea.
Contact: Dr. Young-Chu,
PORTUGAL
Centro Hospitalar de São João Alameda
Prof. Hernâni Monteiro 34, 4200 – 319 Porto Portugal,
Contact: Goreti Nadais
SAUDI ARABIA, KINGDOM
Dr. Alshehri Ali
King Abdulaziz Medical City
Dr. Mohammed Al Jumah
Dr. Edward J. Cupler
Consultant at KFSHRC-Jeddah
SINGAPORE
National Neuroscience Institute, Singapore.
Contact: Dr. Umapathi
TAIWAN
Kaohsiung Medical University Hospital, Kaohsiung, Taiwan.
Contact: Dr. Wen-Chen Liang,
The NETHERLANDS
Academisch Medisch Centrum, the Netherlands.
Contact: Professor de Visser: 020 - 566 - 3442.
TURKEY
Nuri Aydın konuralp caddesi, 4 nolu aile sağlığı merkezi
Esentepe / Antakya, Hatay
Contact Dr. Suleyman Kus Phone: 0326 214 13 45
UNITED KINGDOM
John Walton Muscular Dystrophy Research Centre, Newcastle upon Tyne.
Contact: Dr. Oksana Pogoryelova
Myotonic Dystrophy
Contact: David.Hilton-Jones
UNITED STATES OF AMERICA
National Institutes of Health Clinical Center, Bethesda MD (Washington DC Metropolitan Area):
Contact: Nuria Carrillo, MD
Contact: Kennan Bradley
https://www.genome.gov/27567243/
University of Mass. Memorial Medical Center, Worcester, MA.
Contact: Dr. Lawrence J. Hayward, MD, PhD, Neurology, Neuromuscular Medicine
Telephone: 508-334-2527
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
