Make an impact on federal policy from close to your home.
Share your rare disease story.
Meet other rare disease advocates.
Registration for 2021 will open on November 16, 2020.
WHEN
February 22-March 5, 2021
WHERE
Virtual meetings with your Members of Congress and Virtual Advocacy Events
WHAT
Rare Disease Legislative Advocates (RDLA) staff organizes virtual meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. 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 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
Download and Print Sign to Take Picture with and Post on Social Media after Your Meetings
Online 2020 Meetings Feedback Form
OTHER 2020 MATERIALS AND WEBINAR RECORDINGS:
Social Media Training Webinar Recording
Rare Across America Training Webinar Recording
Practice Your Pitch with Fast Forward for RARE Slides
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
Tips and Advice for Fast Forward for Rare by SmithSolve
Prepare your Pitch Worksheet by SmithSolve
Action Alert on Creating Hope Reauthorization Act
Action Alert on Rare Disease Congressional Caucus
OTHER 2020 ONE PAGERS:
Ensuring Lasting Smiles Act One Pager
Lymphedema Treatment Act One Pager
Medical Nutrition Equity Act One Pager
“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
