INSPIRE CHANGE! PROMOTE ACTION! INFLUENCE POLICY!
What is advocacy?
Advocacy is the act of speaking out on issues in order to influence or bring about a change which results in a better quality of life.
You can promote changes to federal legislation or promote new legislation by joining forces with NMF and other advocates across the country to raise awareness and advance policies to help people with Marfan syndrome and related disorders
There are many reasons to become an advocate. Here are just a few:
To Gain Federal Funding for Research on Marfan Syndrome and Related Disorders
Research is the key to improving the quality of life of those with Marfan syndrome and related disorders and eventually finding a treatment or cure. The government plays an important role in supporting crucial research towards this goal.
To Improve Access to Care
Without access to quality health care, affordable health insurance, disability benefits and other social services, patients can be dramatically impacted. By encouraging our government to offer greater access to more services, you can help ensure a better life for those affected.
To Increase Awareness among Federal Agencies
Elected officials need to know about the impact of Marfan syndrome and related disorders on patients and their families and understand the challenges that people with these disorders face. As a constituent, it is up to you to make sure your elected officials know about these disorders.
Click here to participate in or learn more about Advocacy Day 2013
Click here for NMF Statement on Affordable Care Act.
Click here for Advocacy Priorities.
Click here for Institute Of Medicine Testimony on Social Security Disability.
Click here for the history of Advocacy.
Use the Advocacy Toolkit to learn how to help.
Sign up to become an Advocate today!