Make an impact on federal policy from close to your home.
Share your rare disease story.
Meet other rare disease advocates.
CLICK HERE FOR DETAILS ON YOUR SCHEDULED MEETINGS.
WHEN
August 3- September 7, 2020
WHERE
The local offices of your Members of Congress (meetings will take place either virtually or in-person depending on the office and the state and local rules)
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.
Register for 2020 Training Webinars
Rare Across America Training Webinar will take place on July 9th at 2 pm EST, register here.
Social Media Training Webinar will take place on July 14th at 1:00 pm EST, register here.
Practice Your Pitch with the Fast Forward for RARE Webinar will take place on July 21st at 3:00 pm EST, register here.
Resources and Materials for 2020 Meetings:
One Pager: Rare Disease Congressional Caucus
One Pager: Creating Hope Reauthorization Act
One Pager: Community Home Health and Telehealth Policies
Printable 116th Congressional Scorecards for all 50 States
Online 2020 Meetings Feedback Form
Other materials:
RDLA Tip Sheet: Rare Disease Advocacy on Social Media
RDLA Tip Sheet: Making a One Pager for Meetings with Legislators
Sample thank you letter follow up for Congressional meetings
Free toolkit by Global Genes on Building Relationships with Your Representatives
Other one pagers:
Lymphedema Treatment Act One Pager
Medical Nutrition Equity Act One Pager
Webinar Recording from 2019:
Rare Across America Training Webinar (July 25, 2019)
Slides from Rare Across America Training Webinar (July 25, 2019)
“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 Director
svonfelden@everylifefoundation.org
