Make an impact on federal policy close to your home.
Share your rare disease story.
Meet other rare disease advocates.

WHEN
February 22 – March 5, 2021
(Registration is open from November 16 to January 22)

WHAT

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!

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 webinars, click here. 

For more information, please contact Katelyn Laws, Rare Disease Legislative Advocates Program Coordinator at klaws@everylifefoundation.org.

**Code of Conduct for Rare Across America participants**
 
Participants of Rare Across America are expected to act respectfully and in the best interests of the rare disease community. All participants in Rare Across America meetings with Members of Congress and staff will be respectful and courteous to the Members, staff, and other advocates. No videotaping or recording of the meetings unless there is permission from the Congressional Office and all meeting participants.
 
If you are unable to attend one of your scheduled meetings, please contact the Rare Disease Legislative Advocates as soon as possible.
 
Participants should understand that they will meet with their Member and/or Congressional staff in groups with other participants. Participants will be able to speak for a portion of the meeting but should not monopolize the whole meeting. RDLA schedules meetings for all of the participants. Advocates should not contact offices to request meetings of their own.
 
It is essential for a productive meeting that each advocate has an appropriate “ask” of the Member of Congress. This means it is a federal issue or policy that a Member of Congress can impact. RDLA provides suggested “legislative asks” that advocates may choose to present during the meeting. If a participant chooses to speak on a “legislative ask” of their own, the participant should prepare a one-sheet that explains the issue to leave with the Member of Congress and/or staffer. You can reach out to RDLA to help prepare the one-sheet or join the webinar to learn how to prepare a one-sheet for your issue.