What is Advocacy?
Find Your Representative
Advocacy is the act of educating the public about an issue, supporting or defending a cause, and recommending an action.
During an election cycle, all eyes turn to national, state and local politics. The Scleroderma Foundation advocates on the behalf of the entire scleroderma community throughout the entire year, whether there is an election or not. Several times a year, scleroderma patients and family members visit their Congressional leaders in Washington, D.C. This important action has helped us cultivate new relationships with elected officials and strengthen existing relationships with others.
Over the next few months, we will continue to share your scleroderma stories throughout the halls of Congress. This is an exciting time and we hope you will be a part of it! Become a scleroderma advocate today!
2015 Legislative Agenda
The start of 2015 was also the start of a new Congress (114th) in Washington D.C., as well as the re-writing and re-introduction of the “Scleroderma Research and Awareness Act”. Of critical importance to the scleroderma community in 2015 is not only bringing our patients’ stories to the many new legislators (especially those in key congressional committees), but building on the momentum of our recent success in getting “scleroderma” relisted as an eligible condition for study through the Department of Defense (DOD) Peer-Reviewed Medical Research Program (PRMRP) in FY 15. Our plan is to reach out to Senators currently working on the FY 16 DOD to ensure that “scleroderma” remains listed.
Capitol Hill, April 27-29, 2015 - POSTPONED
We thank everyone who submitted a letter of interest to participate in the upcoming Scleroderma Advocacy Day on Capitol Hill in Washington, D.C. on April 28. In spite of our best efforts to get our bill introduced into this Congress, it has not happened yet and we realize it will not happen before Congress adjourns for recess; therefore, we are postponing Advocacy Day until a later date this year.If you have already sent in a letter of interest to participate in Advocacy Day, your application will be kept on file for consideration once the new date for Advocacy Day is finalized.
Please stay tuned for updates. Meanwhile, we thank you for your interest and your continued support to make the scleroderma community’s voice heard in our nation’s halls of Congress.
- U.S. Senate Website
- U.S. House of Representatives Website
- National Governors Association Website
- Important News from Washington, D.C.
- Tips to Talk to Your Elected Officials