Make an impact on federal policy close to your home.
Share your rare disease story.
Meet other rare disease advocates.
Registration closed on July 3rd. Contact Shannon at firstname.lastname@example.org if you have any questions.
July 29 – September 8, 2019
The local offices of your Members of Congress
Rare Disease Legislative Advocates (RDLA) staff organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The meetings take place in the Member’s district office during the month of August, while Congress is in recess from July 29th to September 8th, 2019. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars.
No prior advocacy experience is necessary.
Registration for this event and all RDLA events are free for rare disease advocates.
Resources and materials for your meetings
Rare Across America Training Webinar (July 25, 2019)
Slides from Rare Across America Training Webinar (July 25, 2019)
One Pager: Rare Disease Congressional Caucus
One Pager: Rare Disease Burden Study Request
One Pager: Newborn Screening Saves Lives Act
Printable Congressional Scorecard for 115th Congress
Guide to the Congressional Scorecard
Online Meeting Feedback Form
Other one pagers:
Medical Nutrition Equity Act
Lymphedema Treatment Act
Ensuring Lasting Smiles Act
Sample thank you letter follow up for Congressional meetings
Congressional Scorecards for 115th Congress
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