The NMF continues to advocate for government policies and resources that improve access to healthcare for the Marfan syndrome and related connective tissue disorders community.   We pursue our legislative agenda with vigor and continually expand our affiliations and partnerships with supportive organizations and coalitions to help us reach our goals.  Our priorities are as follows:

Priorities:

1. Increase federal funding for Marfan syndrome research, specifically NIH support of pediatric, adult, and   ancillary      studies related to the drug losartan.

2. Facilitate partnerships between NMF and the Centers for Disease Control and Prevention focused on Marfan syndrome education targeted at the general public and health care providers.

3. Increase awareness of Marfan syndrome in Congress through congressional testimony, meetings with legislators, and NMF advocacy events.

4. Raise profile of Marfan syndrome and NMF within agencies of the Public Health Service (NIH, CDC, FDA, etc.) through direct meetings and membership on key advisory committees.

5. Work in support of legislation that will improve patient care for individuals with Marfan syndrome including bills focused on; genetic information non-discrimination, orphan disease research, and Medicare/Medicaid reform.

6. Work with the Social Security Administration to improve the disability application process for Marfan syndrome patients.

7. Expand NMF relationships with other voluntary health organizations and public policy coalitions (i.e., the Ad Hoc Group for Medical Research, the FDA Alliance, Friends of CDC, the Coalition for Health Funding).