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Diseases

Genetic and Rare Diseases Information Center (GARD)

Mitochondrial neurogastrointestinal encephalopathy syndrome


Other Names for this Disease
  • MNGIE
  • Myoneurogastrointestinal encephalopathy syndrome
  • MNGIE syndrome
  • Oculogastrointestinal muscular dystrophy
  • OGIMD
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Organizations

Organizations Supporting this Disease

  • American Gastroenterological Association
    4930 Del Ray Avenue
    Bethesda, MD 20814
    Telephone: 301–654–2055
    Fax: 301–654–5920
    E-mail: communication@gastro.org
    Website: http://www.gastro.org/patient

  • Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
    AGMD International Corporate Headquarters
    12 Roberts Drive
    Bedford, MA 01730
    Telephone: 781-275-1300
    E-mail: digestive.motility@gmail.com
    Website: http://www.agmd-gimotility.org

  • Gastroparesis and Dysmotilities Association (GPDA)
    5520 Dalhart Hill NW
    Calgary, AB
    T3A 1S9
    Canada
    Telephone: 403-247-3215
    E-mail: jkf@gpda.net
    Website: http://www.digestivedistress.com

  • International Foundation for Functional Gastrointestinal Disorders
    PO Box 170864
    Milwaukee, WI 53217
    Toll-free: 888-964-2001
    Telephone: 414-964-1799
    Fax: 414-964-7176
    E-mail: iffgd@iffgd.org
    Website: http://iffgd.org/

  • MitoAction
    PO Box 51474
    Boston, MA 02205
    Toll-free: 888-648-6228
    Telephone: 1-888-MITO-411 (648-6411) for support line
    E-mail: info@mitoaction.org
    Website: http://www.mitoaction.org

  • Mitochondria Research Society
    Keshav K. Singh, Ph.D.
    Professor of Oncology
    Editor-in-Chief, Mitochondrion
    Department of Cancer Genetics
    Roswell Park Cancer Institute
    BLSC Building, Room # 3-316
    Elm and Carlton Streets
    Buffalo, NY 14263
    Telephone: 716-907-4349
    Fax: 716-845-1047
    E-mail: keshav@mitoresearch.org
    Website: http://www.mitoresearch.org

  • United Leukodystrophy Foundation (ULF)
    224 North Second Street
    Suite 2
    DeKalb, IL 60115
    Toll-free: 800-728-5483
    Telephone: 815-748-3211
    Fax: 815-748-0844
    E-mail: office@ulf.org
    Website: http://www.ulf.org/

  • United Mitochondrial Disease Foundation
    8085 Saltsburg Road, Suite 201
    Pittsburgh, PA 15239
    Toll-free: 888-317-8633
    Telephone: 412-793-8077
    Fax: 412-793-6477
    E-mail: info@umdf.org
    Website: http://www.umdf.org

Social Networking Websites

  • DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support

Other Names for this Disease
  • MNGIE
  • Myoneurogastrointestinal encephalopathy syndrome
  • MNGIE syndrome
  • Oculogastrointestinal muscular dystrophy
  • OGIMD
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.