Myasthenia Gravis Resources

Many organizations offer local and national events specifically for people with myasthenia gravis (MG). What follows is not a complete list, and you may find more organizations and events in your area. Some hospitals, universities, and research institutions may also offer events and information focused on myasthenia gravis.

Myasthenia Gravis Foundation of America

Myasthenia Gravis Foundation of America (MGFA) is a volunteer-run organization that offers support groups around the country. Volunteers normally hold in-person support group meetings, but for now, are sponsoring online-only events. MGFA also sponsors research into new treatments for myasthenia gravis.

Among MGFA’s many other activities, they developed an app called myMG that helps people track their symptoms and get the latest MG drug news. MGFA also provides a patient registry, a podcast, videos, and other resources for people to learn more about their MG, whether they are newly diagnosed or experienced in managing their disease.

Myasthenia Gravis Rare Disease Network

The Myasthenia Gravis Rare Disease Network (MGNet) works to connect people with MG to researchers working on new treatments. Its video series explains MG and clinical trials. MGNet is part of the National Institutes of Health’s Rare Diseases Clinical Research Network.

Myasthenia Gravis Hope Foundation

The Myasthenia Gravis Hope Foundation offers resources about MG and raises awareness of the condition. You can download helpful information on MG, managing at home, and a “what is MG” poster.

Conquer Myasthenia Gravis

Conquer Myasthenia Gravis is a nonprofit focused on helping people with MG living in Illinois, Indiana, and Wisconsin. They provide support groups, videos, newsletters, and prescription assistance. This group also fundraises to support research on MG.

Myasthenia Gravis Association

The Myasthenia Gravis Association (MGA) focuses on offering in-person support to people with MG in Arkansas, Kansas, Missouri, and Nebraska. Their website also offers information and resources for people outside those areas.

Raremark for Myasthenia Gravis

Raremark MG is a website with MG news and forums where people with MG chat one-on-one online. The company also sponsors surveys and studies for people with MG.

MyAware

MyAware is a nonprofit focused on adults and children with MG living in the United Kingdom. It works to raise awareness and fund research into the condition. While you may not be able to fly to one of their support group meetings, you can take advantage of their many online resources and Zoom-based meetings. They sponsor a quiz night online game every 2 weeks.

Muscular Dystrophy Association

The Muscular Dystrophy Association (MDA) works to support adults and children with all types of neuromuscular disease, including myasthenia gravis. The nonprofit funds research into neuromuscular disease, and its volunteers run 65 offices across the United States.

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Written by: Jessica Johns Pool | Last reviewed: August 2020