The 4th annual In-District Lobby Days is fast approaching. From July 31st through September 1st, rare disease advocates from across the country will surge into the district offices of their Members of Congress to advocate for legislation benefiting the rare disease community.
Interested in meeting with your U.S. Senators and Representative in their district offices during the summer Congressional recess? Rare Disease Legislative Advocates will schedule meetings for you, and help you prepare by providing key background materials.
You can access the recording of the preparatory webinar held on July 28th here and the slides are available here.
Leave-Behind Materials for Key Legislative Issues
–Issue brief on OPEN ACT in the House (HR 1223) (from EveryLife Foundation for Rare Diseases)
–Issue brief on OPEN ACT in the Senate (S 1509) (from EveryLife Foundation for Rare Diseases)
–Background on the Rare Disease Congressional Caucus (from Rare Disease Legislative Advocates)
–Principles for Health Care Reform (from NORD)
–Slides on FDA and NIH Appropriations (from Research!America)
– Sample thank you letter follow up for Congressional meetings
– Legislative Scorecards
–Free toolkit by Global Genes on Building Relationships with Your Representatives
–Suggestions on utilizing social media to engage legislators
–How to create a legislative one-pager