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For Patients

Physicians Familiar with GNE Myopathy

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:


Center for Genetic Sequencing


McMaster University Health Centre in Hamilton, Ontario in Canada.
    Contact:  Dr. Mark Tarnopolsky


First Teaching Hospital of Beijing University, Beijing
    Contact:  Dr. Wang  Zhaoxia


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


Fredrich Bauer Institute, Munich. 
    Contact:  Dr. Sabine Krause 
Friedrich Bauer Institute, Laboratory for Molucular Myology, Munich.  


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 


Hadassah Hospital,  Jerusalem. 
    Contact:  Dr. Stella Mitrani-Rosenbaum


Catholic University, Rome
    Contact:  Dr. Massimiliano Mirabella and Dr. Aldobrando  Broccolini
Istituto Neurologico Carlo Besta 
    Contact:   Dr. Barbara Pasanisi


National Center for Neurology and Psychiatry,Tokyo.
    Contact: Dr. Ichizo Nishino


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




Centro Hospitalar de São João Alameda
    Prof. Hernâni Monteiro 34, 4200 – 319 Porto Portugal,  
    Contact: Goreti Nadais  


Dr. Alshehri Ali
    King Abdulaziz Medical City
Dr. Mohammed Al Jumah
Dr. Edward J. Cupler
    Consultant at KFSHRC-Jeddah


National Neuroscience Institute, Singapore.
    Contact: Dr. Umapathi 


Kaohsiung Medical University Hospital, Kaohsiung, Taiwan.
    Contact:  Dr. Wen-Chen Liang


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


John Walton Muscular Dystrophy Research Centre, Newcastle upon Tyne.
      Contact: Dr. Oksana  Pogoryelova 
Myotonic Dystrophy
      Contact:  David.Hilton-Jones


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  

      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:

Prevention Genetics

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