We will be hosting a series of training webinars for Rare Disease Week attendees!
No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates.
For more information or for any questions, please contact Katelyn Laws, Rare Disease Legislative Advocates Program Coordinator at firstname.lastname@example.org or visit https://everylifefoundation.org/rare-advocates/rare-disease-week/.
**Code of Conduct for Rare Disease Week participants**
Participants of Rare Disease Week are expected to act respectfully and in the best interests of the rare disease community. All participants in Rare Disease Week 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.
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For more information on Rare Disease Week, please click here.
Para obtener más información sobre Rare across America, por favor, haga clic aquí