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MG Patient Advocacy

 

Making Our Combined Voices Heard

The MG Community faces challenges that impact how we live our lives with myasthenia. In order to overcome those challenges, 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.

 

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 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 to Genna Mvalo at the MGFA – gmvalo@myasthenia.org.

 

Latest Advocacy Alerts and Actions

 

ACTION ALERT - Please take action:

MGFA Advocates for the STAT Act: Volunteers Should Contact Members of Congress

The United States House of Representatives and Senate have introduced the Speeding Therapy Access Today (STAT) Act of 2021 (Bill H.R. 1730/S,760). This is exciting because MGFA advocated for the need of the STAT Act during the March 2021 Rare Across America advocacy meetings with political leaders.

 

The STAT Act is a bipartisan bill aimed at improving the development and access to therapies for rare disease patients like those with myasthenia. The MG Community would greatly benefit if this becomes a law.

 

The Every Life Foundation has a great article on it here: Congress Introduces the Speeding Therapy Access Today Act | EveryLife Foundation for Rare Diseases

 

As part of our MGFA Our MG Voice action alert, we ask that you contact your regional members of Congress in the House and the Senate and ask them to read and pass the STAT Act as soon as possible. Since this is a bipartisan effort, we hope our efforts can help move this to pass.

 

The Every Life foundation has a clickable link to help you take action and contact your political leaders: Take Action | EveryLife Foundation for Rare Diseases

 

MGFA Signs Letter to President Biden in Support of the RISE Act for Increased Research Investment.

Through Research!America , MGFA has signed a letter to President Joseph Biden in support of the RISE Act also known as the Research Investment to Spark the Economy Act ( Bill H.R. 869/ S. 289) asking the United States to invest in scientific research as part of the next spending vehicle he advances as part of his agenda. The full letter can be found here: https://www.researchamerica.org/sites/default/files/Sign%20on%20letter%20to%20Biden%20%28RISE%20Act%29.pdf

 

MGFA Partners with Rare Across America for Rare Disease Day and Political Leader Discussion

The week of March 1, 2021, 10 MG advocates volunteered their time to participate in RARE Across America hosted by the EveryLife Foundation for Rare Diseases. The volunteers had meetings with Senators and Representatives to discuss key advocacy issues. Meetings were held virtually, and advocates were paired with other advocates from their state or local district.

Check out what our volunteers said about their experience!

 

NORD Upcoming Webinar: Advocating for a Rare Disease Advisory Council in your State

Interested in advocating for a Rare Disease Advisory Council in your state? You would be helping to give patients, families and supporters an opportunity to advise state policymakers on ways to address the unique challenges in the rare disease community. 

REGISTER AT THIS LINK HERE 

 

MGFA Supports Dr. Janet Woodcock as the Acting Commissioner of the FDA.

MGFA has submitted a letter, lending support to Dr. Janet Woodcock as acting FDA commissioner. She had been the FDA’s head of Drug Evaluation and Review. Good luck and congratulations Dr. Woodcock.

READ THE LETTER

A World Without MG