Rare Across America

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  • Make an impact on federal policy close to your home.
  • Share your rare disease story.
  • Meet other rare disease advocates.


When: July 29 – September 8, 2019
(Registration is open from May 8 through July 3, 2019)

Where: Local offices of your Members of Congress

What: 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.