GNE Myopathy

Organizations

Are there support groups for people living with GNE myopathy?

There are many support groups for people living with GNE myopathy (inclusion body myopathy 2), such as:

Neuromuscular Disease Foundation - a ThinkGenetic Advocacy Partner

Muscular Dystrophy Association (MDA)

  • Phone: 800-572-1717 (toll-free)
  • Email: mda@mdausa.org
  • Website: www.mda.org

The Myositis Association

  • Phone: 800-821-7356 (toll-free) or 703-299-4850
  • Email: tma@myositis.org
  • Website: www.myositis.org

Muscular Dystrophy UK

ARM (Advancement of Research for Myopathies)

TREAT-NMD

Sephardic Health Organization for Referral and Education (SHORE)

Patients Association for Distal Myopathies (PADM)

SOURCE: Emory University - Department of Human Genetics in collaboration with ThinkGenetic • https://www.thinkgenetic.com/diseases/nonaka-myopathy/organizations/7097 • DATE UPDATED: 2017-10-23

References

Gene Reviews 07 Mar. 2016 http://www.ncbi.nlm.nih.gov/books/NBK1262/

Ultragenyx Pharmaceuticals, Inc. 07 Mar. 2016 http://www.ultragenyx.com/patients/gnem/

Advancement of Research Myopathies (ARM) 07 Mar. 2016 http://www.hibm.org/arm/home

Neuromuscular Disease Foundation 07 Mar. 2016 http://www.ndf-hibm.org/index.php/contact

Treat-NMD Neuromuscular Network 07 Mar. 2016 http://www.treat-nmd.eu

Sephardic Health Organization for Referral and Education 07 Mar. 2016 http://shoreforlife.org/index.html

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