Our Caregiver Resource page has information and resources to help and support caregivers in the SCD community. Check it out here:

Caregiver Resources

January 2022 – Special Issue

Home / Policy & Legislation / January 2022 – Special Issue

Memo: January 2022 - Special Issue

RE: 2022 Sick Cells Ambassador Policy Forum Updates


Purpose of Memo: The purpose of this memo is to provide updates about the 2022 Sick Cells Ambassador Policy Forum. We invite companies to become sponsors of the Policy Forum and ensure that our Ambassadors have a successful day of advocacy workshops and training. 

Event Dates: The virtual event will take place on March 22nd – 23rd, 2022. Day One will host the Ambassador Policy Forum. This year’s forum focuses on federal and state advocacy trends and provides an opportunity to collectively discuss concrete solutions to remove barriers in policy making. Speakers will be announced closer to the date of the event. Day Two will host the Ambassador Virtual Hill Day. Advocates will have the opportunity to meet with their legislators and educate them about sickle cell disease issues and recommendations. 

Policy Forum: The Ambassador Policy Forum: Day One will have two themes (1) State-Level Policy and (2) Federal-Level Policy. 

  • State Level Policy sessions will equip advocates with tools and training for state-level policy efforts across two sessions:
    • Session 1 will focus on Collaborative Partnerships. This will answer the following questions:
      1. Who are your local collaborators
      2. How do you network with local collaborators
      3. What is the purpose of collaborating at the local level 
    • Session 2 will focus on Organizing a Supporter Base. This session will answer the following questions:
      1. How to organize in the local community
      2. How to coordinate grassroots advocacy efforts
      3. What are some strategies when organizing a local movement
  • Federal Policy. This session is focused on educating Ambassadors on current federal legislative priorities and preparing advocates for the Hill Day. We will utilize breakout rooms to review one-pagers, practice storytelling, and review day-off logistics. Each breakout room will have an Ambassador Team Lead and a Sick Cells staff member leading the discussion. 

Virtual Hill Day: On Day Two, Ambassadors will be able to advocate for federal policies through virtual meetings with their legislators and staff. Sick Cells has contracted Advocacy Associates to assist with the advocacy day scheduling. We will schedule up to 100 meetings depending on registration of Ambassadors. 

While event registration is only available for Ambassadors, we currently have over 100 active Ambassadors enrolled in the program.

Resources and Tools: Sick Cells is working to ensure the Policy Forum and Hill Day provides the most interactive experience for our Ambassador. Sick Cells will offer several tools and features in order to assist in the preparedness and efficiency of our Ambassadors:

  1. Mail-out Materials. Sick Cells will be mailing attendees a welcome packet containing the following hand-outs for the event: Branded Agenda, Presenter Bios, Federal Priorities One-Pager, “How to Share Your 5-Minute SCD Story” toolkit, and “A Guide to Meeting with Your Legislator” toolkit. The Policy Forum materials will be branded with Sponsor logos. Additionally, a small gift of tea bags will be included in the package. 
  2. Virtual Hill Day platform. Sick Cells will offer a web-based platform for Ambassadors to use during their virtual Hill Day appointments. Ambassadors will be able to access their schedules online, receive notifications and reminders, and connect with ease to the virtual meeting room. Prior to the meetings, Ambassadors 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. During the meetings, our Sick Cells team will be able to chat with Ambassadors and take notes. This platform will help ensure success for virtual hill meetings.
  3. SCD Federal Priorities One-pager. Sick Cells will develop a one-pager for Ambassadors to present to federal policy makers. Sick Cells, in collaboration with the Sickle Cell Disease Association of America (SCDAA), is currently working to outline national federal priorities for the SCD community. Priorities will include (1) championing SCD legislation that is active in Congress, (2) advocating for appropriations, and (3) growing the SCD caucus. Our 2022 federal priorities and one-pager will be announced prior to the Ambassador Policy Forum.

Please contact info@sickcells.org with questions.

Stay in the Know

Sign up for our newsletter!