As part of our mission to create connections, enhance lives, improve care, and cure MG, the MGFA engages in a variety of advocacy efforts. We work 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.
You can learn more about our advocacy priorities on our Advocacy webpage. Our primary focus areas are:
- Improving access to affordable care
- Fostering rare disease research and development (R&D)
- Expanding disability benefits and support
We are gearing up for an important date on the advocacy calendar – Rare Disease Week on Capitol Hill. Organized by the EveryLife Foundation for Rare Disease and held during the last week of February, this event brings together advocates from around the country to talk to their elected representatives about priorities that matter to the rare disease community.
Every year, people living with myasthenia gravis attend and talk about important issues for the MG community. You can read more about the experience of one such advocate, Siobhain Carolan, on this blog post.
“A lot of progress has been made, but still there is so much that people can do,” says Brenda Colmenares, who lives with MuSK MG and works as the EveryLife Foundation. “Whether it’s seeing a bit of progress with your disease or being able to make an impact by taking action, it’s very rewarding.”
It’s not too late to participate. Visit the EveryLife Foundation website to register, then let us know you’re attending (email mgfa@myasthenia.org). We would love to hear about your experience.
In advance of Rare Disease Week, we are excited to provide updates about the MGFA’s advocacy work.
We have recently joined two advocacy efforts with fellow community members in rare disease:
Telehealth Access for America
This public education campaign is supported by leaders in healthcare committed to improving care, amplifying the patient voice, and protecting access to telehealth services. Through the campaign, patient advocacy organizations and medical organizations are working together to educate the community about the value of telehealth and the critical role it plays in healthcare outcomes, delivery, and access.
The implementation and continuation of telehealth services policies supports healthcare access for all, especially within underserved communities, improving patient quality of life and embracing patient and caregiver autonomy.
Rare Disease Diversity Coalition
Launched by the Black Women’s Health Imperative, the Rare Disease Diversity Coalition is a group of patient advocacy associations, medical associations, and biotech and pharmaceutical companies working to address challenges faced by underserved populations within rare diseases through evidence-based solutions.
Participating in this coalition allows the MGFA to contribute to work that aims to reduce racial disparities within the rare disease community as well as alleviate the burden of rare disease for historically marginalized populations. Through our participation, the MGFA aims to expand our global advocacy efforts and address unmet needs within the MG community, such as minimizing the diagnostic odyssey, expanding outreach through avenues like community health centers, and working towards a more diverse, equitable, and inclusive healthcare system.