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2023 National SCD Policy Forum

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The National SCD Policy Forum brought together sickle cell advocates from across the country for a two-day federal advocacy event. This tri-collaborative event was hosted by Sick Cells, the Sickle Cell Disease Association of America, Inc. (SCDAA) and the Sickle Cell Community Consortium (SCCC).

  • Day One featured educational sessions on federal advocacy trends and provided an opportunity to discuss concrete solutions to existing gaps in sickle cell disease (SCD) policy. It also included opportunities to “practice your pitch” before meeting with your legislators.
  • Day Two featured the Virtual Hill Day. Advocates had the opportunity to meet with their legislators and educate them about sickle cell disease issues and policy recommendations.

Final Report

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Watch the recording of Day One below

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What We Prepared

Our three organizations worked hard to host the most comprehensive advocacy event for SCD to date. The goal of this event was to bring together SCD advocates from across the country to:

  • Build awareness of federal opportunities for SCD
  • Educate legislators on funding and policy interventions that support the needs of SCD Warriors and the SCD community as a whole

Together, we are created various materials in order to assist in the preparedness and efficiency of all attendees:

1) Mail-out Materials. The hosts mailed attendees an event packet containing the following hand-outs for the event: Branded Agenda, Presenter Bios, Federal Priorities One-Pager, and advocacy toolkits.

2) Virtual Hill Day Platform. The event featured a web-based platform for advocates to use during their Virtual Hill Day appointments. Advocates had access to their schedules online, received notifications and reminders, and connected with ease to the virtual meeting room.

Before the meetings, advocates could customize talking points to refer to during meetings, read legislator bios and information, and upload one-pagers or materials to be shared with congressional staff.

3) Office Hours. In order to ensure that all advocates felt comfortable ahead of the Virtual Hill Day, all three organizations hosted office hours outside of normal business hours. Office hours were available on weekday evenings and weekends for two weeks before the event. This time was used to answer questions and walk through talking points for the virtual meetings.

3) SCD Federal Priorities One-pager. This important toolkit highlights the most important talking points advocates can bring to their legislators. It also functioned as a leave-behind resource for the Hill staffers and legislators.

*Download the complete Program Book below*

Resources

We created the following resources to make sure all advocates feel prepared and have the tools they need to succeed in their legislative meetings.

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Event Sponsors

This event was sponsored by the following organizations. Thank you for supporting our work.