Thank you to everyone who reached out to their Representatives to educate them about rare diseases! We received a lot of great feedback based on participation across the country in both regular outreach activities and related to the Handprints on the Hill Campaign. You can continue to keep this moment going by continuing to reach out to your representatives. View the templates below for more ideas.
Support on Rare Disease Day from Members of Congress
Senator Kay Hagan (NC), the sponsor of the TREAT Act introduced in the U.S. Senate recently, issued a press release in support of Rare Disease Day. Other support from members of Congress included:
- Tim Bishop (NY) spoke on the House floor in recognition of Rare Disease Day, concluding with: “I urge my colleagues to take a moment today to think about what more Congress can do to help Americans and their families suffering from rare diseases. Together, we can do more for all.” Read the full statement.
- U.S. Representative Ted Deutch (FL) “tweeted” in support of Rare Disease Day and increased research.
- U.S. Senator Sheldon Whitehouse (RI) sent a message of support to the Rhode Island Rare Disease Foundation to be shared at the foundation’s event.
- Senators Sherrod Brown (OH) and John Barrasso (WY) submitted Senate Resolution 383 designating Feb. 29, 2012, “Rare Disease Day” across the U.S.
- Rep. Michael Burgess (TX) made a 1-minute statement on the House floor. View the video.
- We also heard from many of you that you got personal responses from your Representatives based on your outreach activities!
These actions were made possible by Rare Disease Day Partners who asked their members of Congress to support the day.
Handprints on the Hill
More than 16,000 letters were submitted to elected officials through our 24-hour “Handprints on the Hill” campaign. This campaign was widely shared through the social media. Letters were submitted by people in all 50 states, with the highest participation in New York and California. Approximately 2/3 of the participants added their own information to personalize the message. Several patient advocates received responses from their officials.
On-Going Outreach to Representatives
Every voice is important in this process and together we can make our voices heard. If legislators are more informed on the issues, they will be able to make better decisions for the constituents they serve. Read about NORD’s on-going policy initiatives and current ways to Take Action on policy issues related to rare diseases here.
Influencing public policy to promote political and/or social change is a civic duty. The one constant we all must remember is that legislators have to get re-elected and they pay close attention to the views and opinions of their constituents. Remember, NORD and our partner organizations do not vote, but you do. The ultimate authority of the U. S. Congress to act resides in individual voters, not in institutions.
You can use this letter template to send to your representatives. We encourage you to customize the letter to share some specific details about your disease or story. You can add some information before the paragraph, “As a member of Congress…” Download the letter.
You can use the following tools to find the name and contact information for your representatives: