Make an impact on federal policy close to your home.
Share your rare disease story.
Meet other rare disease advocates.
Registration will open on May 4, 2020. Contact Shannon at svonfelden@everylifefoundation.org if you have any questions.
WHEN
August 3- September 7, 2020
WHERE
The 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 August 3rd to September 7th, 2020. 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 from 2019
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
Other one pagers:
Other materials:
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
“During my meeting I was able to share my story about living with sickle cell disease and how these policies can benefit the disease community. I want to thank the RDLA for preparing me and giving me such a great opportunity to share my thoughts and opinions.” – Kadeem, Somerville, MA
For more information, please contact:
Shannon von Felden, Rare Disease Legislative Advocates Program Manager
svonfelden@everylifefoundation.org
