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

  1. Day One features educational sessions on federal advocacy trends and provides an opportunity to discuss concrete solutions to existing gaps in sickle cell disease (SCD) policy. It also includes opportunities to “practice your pitch” before meeting with your legislators.

  2. Day Two features the Virtual Hill Day. Advocates will have the opportunity to meet with their legislators and educate them about sickle cell disease issues and policy recommendations.


What to Expect


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

  1. Build awareness of federal opportunities for SCD

  2. Educate legislators on funding and policy interventions that support the needs of SCD Warriors and the SCD community as a whole


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


1) Mail-out Materials. The hosts will mail 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 features a web-based platform for advocates to use during their Virtual Hill Day appointments. Advocates can access their schedules online, receive notifications and reminders and connect with ease to the virtual meeting room.


Before the meetings, advocates can 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 feel comfortable ahead of the Virtual Hill Day, all three organizations will host office hours outside of normal business hours. Office hours will be available on weekday evenings and weekends for two weeks before the event. Advocates will have the option to sign up for the office hours that work best for them. This time will be used to answer questions and walk through talking points for the virtual meetings.


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

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