Make an impact on federal policy from close to your home.
Share your rare disease story.
Meet other rare disease advocates.
Haz clic aquí para obtener información en español y para registrarte.
WHEN: February 22-March 5, 2021 (Virtual Congressional meetings on March 3rd and 4th)
WHAT: Virtual meetings with your Senators and Representative AND virtual advocacy events.
Rare Disease Legislative Advocates (RDLA) organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. Meetings will take place virtually on March 3rd and 4th. The RDLA team also helps to prepare advocates for their meetings, provides legislative resource materials, and hosts pre-meeting training webinars. See below for a full schedule of virtual events!
Week 1: RARE Readiness
Monday, 2/22: Selfie Monday—Post a picture on social media and tag #RareAcrossAmerica2021
Wednesday, 2/24: Fast Forward for Rare Practice Your Pitch Webinar, 2:00pm-3:30pm ET
Register here
Thursday, 2/25: Virtual Rare Disease Caucus Briefing, 1:00pm-2:00pm ET
Register here
Friday, 2/26: Share Your Rare Story—Take a video and post on social media and tag #RareAcrossAmerica2021
Week 2: RARE Rally
Monday, 3/1: Rare Disease Day at NIH (virtual)—Register on NIH website
Tuesday, 3/2: Prepare for Your Virtual Hill Meetings (One pagers and resources at www.RareAcrossAmerica.org)
Wednesday, 3/3: Virtual Hill Meetings with Senators (12-5 pm ET)
Thursday, 3/4: Virtual Hill Meetings with Representatives (12-5 pm ET)
Friday, 3/5: FDA’s Rare Disease Day 2021 (virtual)—Register on FDA website
No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates. More information at www.RareAcrossAmerica.org.
SAVE THE DATE: The Rare Across America training webinar will take place on February 4th at 2:00 pm ET, First Time Advocates Webinar on February 9th at 2:00 pm ET, and the Team Leaders Webinar on February 11th at 2:00 pm ET. To register for the February 4th and 9th training webinars, click here.
2020 RESOURCES AND MATERIALS:
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
