Advocate for Patients

Making Our Combined Voices Heard

Our MG Voice is the MGFA’s ongoing MG patient advocacy program that puts the future of our community in your hands. The call to action? We ask you to step up and engage in activity that could make a huge difference in people’s lives. We must come together and make sure our voices are heard clearly at all levels of government, across the medical and insurance communities, and around the world.

We do so much to help drive action and results that can help our community:

  • Write to Congress to ensure rights for rare disease patients.
  • Work to submit and obtain a government proclamation recognizing MG.
  • Drive important alerts across the community and build awareness.
  • Join efforts to influence insurance carriers to appropriately cover MG patients.
  • Pitch journalists to drive awareness in the media.
  • Meet with political figures to communicate the needs of those with MG.

To learn more and become part of this national advocacy team, please reach out.

Siobhain at the U.S. Capitol for Rare Disease Day
Rare Disease Day
Drea and Siobhain at the U.S. Capitol for Rare Disease Day

MGFA Advocacy Priorities

A disease is characterized as rare when it affects fewer than 200,000 people in the United States, yet there are more than 30 million Americans living with one or more rare diseases, myasthenia gravis being one of them. MGFA works diligently to educate our elected officials and policymakers about the lived experience of those with rare diseases. We also arm MG patients with the tools, knowledge, and resources needed to advocate on behalf of the MG community.

As the sole, national nonprofit organization dedicated to supporting those impacted by myasthenia gravis, the MGFA is committed to:

  • Educating the public about MG and raising greater awareness of rare diseases at large.
  • Advocating for equitable access to comprehensive healthcare that is person centered and physician directed.
  • Supporting cutting-edge research and policies that further innovation and value the patient perspective within rare disease research and drug development.   

Improving Access to Affordable Care

MGFA recognizes that there are a variety of social drivers that can impact health-related outcomes. Social, economic, political, and environmental factors can influence an individual’s health and wellbeing. We must encourage Congress to stand for policies that strive for equitable access to healthcare and minimize barriers to that care. This includes supporting legislation that works toward:

  • Expanding access to comprehensive and specialized care through telehealth flexibilities.
  • Protecting patients from inappropriate health policies and programs that delay or inhibit access to necessary, life-saving treatments.
  • Ensuring affordability and minimizing out-of-pocket costs for prescription drugs through drug pricing reform and the expansion of healthcare coverage.

Fostering Rare Disease Research & Drug Development

The increased focus on MG research within the last decade has led to a vast array of newly developed, FDA-approved treatments for MG, revealing how imperative it is to foster innovation and invest in promising research and drug development. With the hope that this research will one day lead to a cure, the MGFA will continue to support legislation that works toward:

  • Advancing rare disease research and drug development through accelerated approval processes, incentivization programs, and patient registries.
  • Encouraging patient engagement from the inception of drug development to product distribution.
  • Prioritizing diversity within clinical trials.

Expanding Disability Benefits and Support

Myasthenia gravis can affect more than just physical health; it can shape every aspect of a person’s daily life. Those who care for people with MG are deeply impacted as well. The MGFA is committed to supporting the MG Community holistically and will continue to champion legislation that works toward:

  • Improving disability support and ensuring access to disability programs such as Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
  • Expanding coverage for home health care.
  • Recognizing caregivers as essential members of a patient’s care team and implementing caregiver programming pertaining to mental health support, financial security, and employer accommodations.