Inspire change. Promote Action. Influence Policy.

You can promote changes to federal legislation or promote new legislation by joining forces with us and other advocates across the country to raise awareness of Marfan syndrome and related conditions, put the spotlight on the issues that are important to our community, and advance policies to help create a brighter future for people living with Marfan syndrome and related conditions.

Each year, we conduct coordinated congressional outreach to advance our community’s legislative agenda. As part of our nationwide network of volunteers, you can impact the public health and patient care policies that are our grassroots network priorities.

Advocacy activities range from emailing your local congressmen to joining us in Washington, DC, to take our messages to policy-makers on Capitol Hill. For further background about how our government works, please visit the White House website.

If you want to help get our collective voice heard in Washington, DC, please join us as a legislative ambassador. You will get the inside track on our legislative asks and guidance on how to contact your lawmakers by phone, email, and social media, as well as through home office visits and visits to Capitol Hill. To get involved, please send your name, address, cell, email, diagnosis to media@marfan.org.