Make your voice be heard during Rare Disease Week!
Join Kids Conquering Sickle Cell Disease Foundation during Rare Disease Week at Rare America. We are joining the Every Life Foundation uniting with compassionate advocates embraced for a change.
Each year we look forward to advocating on Capital Hill during Rare Disease week on Capital Hill, but COVID 19 has presented a shift to virtual advocacy.
We look forward to continued advocacy to :
- Network with advocates around the country to build partnerships and unite to strengthen our community of advocacy.
- Make a difference on Capital Hill and locally to build relationships with members of Congress and staff meeting face to face with lawmakers and staff who shape our national healthcare policies.
- Become more informed on legislation currently under consideration by Congress, enhance effective advocacy techniques & better understand critical issues that affect your continued access to quality care.
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-3:00pm ET
Thursday, 2/25: Virtual Rare Disease Caucus Briefing, 1:00pm-2:00pm ET
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)
No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates. More information at www.RareAcrossAmerica.org.
All events require advance registration. For more information or to register, please visit http://rareadvocates.org/rdw/.
*Hosted by an outside organization and listed for informational purposes.
