A Message From Diane E. Dorman, Senior Director of Public Policy at NORD:
With 25 million men, women and children in the United States suffering with rare "orphan" diseases, I knew there had to be a way to tap into such an amazing and powerful resource. That's when I came up with the idea for the Volunteers in Public Policy program.
Today, people all over the nation have committed to rite to their senators and representative in the U.S. Congress, on their own time, using their own stationery, and without personal reward.
NORD Volunteers in Public Policy
The purpose of the Volunteers in Public Policy program is to provide U.S. congressional representatives with straightforward, individualized expressions of concern from their constituents on health-related and other issues. The ultimate goal is to call congressional attention to issues that affect medically disenfranchised Americans with rare disorders, and to encourage elected officals to act on those concerns. By particating in the program, Volunteers in Public Policy agree to write to their congressional representatives as often as four times a year about about health or other related issues. I, in turn, provide them with background information to help them understand NORD's position as well as an analysis of opposing views. In their letters, Volunteers can advocate any position they want, but the expectation is that NORD's view would typically find support among its members.
The key to success is commitment and action!
Washington, DC lawmakers have become increasingly insulated from their constituencies. As a result, many people are turned off by the political system in Washington. They've become cynics, convinced that their opinions account for nothing. And so today, fewer and fewer people take the time to express their opinions to elected officals, or even to vote! The one constant we fail to remember is that legislators have to get re-elected and they pay close attention to the views of their constituents who voice their opinions. I strongly believe that those of us who choose to get involved can and will make a difference. It is in that spirit, therefore, that I ask patients, families and friends of the Polychondritis Educational Society, Ltd. to make a commitment to the entire rare disease community. Working together as one, we can make a difference! Remember! Your organization does not vote. You do! The ultimate authority of the U.S. Congress to act resides in voters - not in institutions.
For more information about the Volunteers in Public Policy program, contact Diane E. Dorman, Senior Director for Public Policy at NORD at ddorman@rarediseases.org or at (202) 496-1296.
Or write to:
Diane E. Dorman, Sr. Dir. for Public Policy
National Organization For Rare Disorders - Washington Office
1050 17 th Street, NW, Suite 600
Washington, DC 20036
Phone/202-296-1296 x 3012; Fax/ 202-463-6245
