Inspire Change. Promote Action. Influence Policy.
Advocacy is the act of speaking out on issues to influence or bring about a change. Be one of the legislative ambassadors and help advocate for Vascular Ehlers-Danlos Syndrome.
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 Vascular Ehlers-Danlos syndrome, or VEDS, 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 VEDS and related conditions.
Each year, we conduct coordinated congressional outreach with The Marfan Foundation 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 want to help get our collective voice heard in Washington, DC, please join to be one of the Vascular Ehlers-Danlos Syndrome legislative ambassadors. 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, join our legislative ambassador team by emailing volunteer@marfan.org.
Go back to the see the other volunteer teams.
