We will be hosting a series of training webinars for Rare Disease Week attendees!

• General Training Webinar: June 22nd, 2:00pm ET
• Team Coordinator Webinar: June 29th, 2:00pm ET --- There is no registration for this webinar. The link to attend will  be sent to all team coordinators once the coordinators have been selected.
• New Advocate Training Webinar: July 1st, 2:00pm ET
• Fast Forward for Rare: July 8th, 2:00pm ET

• Team Coordinator Office Hours: July 12th, 4:00pm ET
• Open Office Hours for all Rare Disease Week Registrants: July 13th, 4:00pm ET
• Open Office Hours for all Rare Disease Week Registrants: July 19th, 4:00pm ET

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 klaws@everylifefoundation.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.