MGFA Partners with Rare Across America for Rare Disease Day and Political Leader Discussions
Members of the Myasthenia Gravis Foundation of America and the patient advoacacy organization Rare Across America are partnering on meetings with political leaders on Capitol Hill to spotlight the challenges of rare disease patients. These online meetings will include representatives from both organizations speaking with a variety of political leaders and staff members to highlight important calls to action that will help the rare disease community.
These important advocacy meetings are taking place as part of Rare Disease Day activity after the February 28th date. For more information about this collaborative effort, feel free to contact Genna Mvalo of the MGFA at firstname.lastname@example.org.
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 – email@example.com.
Latest Advocacy Alerts and Actions
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. Join this really informative, FREE, and exciting webinar conducted by NORD to lear how.
Date: March 4, 2021
Time: 2:00 p.m. - 3:00 p.m. Eastern
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