Advocacy is the act of speaking out on issues to influence or bring about a change.

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 conditons, 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. We offer a complete advocacy guide that explains how you can get involved. For further background about how our government works, please visit the White House website.

If you'd like to work with us to advocate for the Marfan syndrome and related disorders community, please contact us at

Advocacy Guide Download