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Advocacy

The mission of Sick Cells is to improve the quality of life and care for people living with sickle cell disease (SCD). Our approach to creating everlasting change includes helping shape public policy, educating the SCD community to be highly engaged advocates and harnessing the power of impactful storytelling. Through these efforts we will end the stigma of SCD and create greater awareness in the general public overall.

To address these challenges, Sick Cells is working to:

Elevate

the voices of patients and the entire SCD community,

Educate

decision makers about the grave challenges, unique needs and sharp disparities this community faces, and

Empower

the SCD community to effectively advocate on important topics and policies.

Overview of Advocacy Programs

Sick Cells achieves its mission through two advocacy programs: Faces of SCD Storytelling
Program and the Sickle Cell Ambassadors Program.

Read Faces of SCD Stories

Faces of SCD Storytelling Program

Sick Cells documents the lives of people with SCD and their support systems. The purpose is to highlight the resilience of the community and complex challenges the community faces through the voice of the patient. The goal is to eliminate stigma by showing truths from the patients. Sick Cells documents in varies forms including photo series, video series, social media, and written form.

What We’ve Learned from Listening to the Community

  • Increased need for data dissemination
  • Increased need for sickle cell trait awareness
  • Demonstrated need for community advocacy tools at the local and federal levels
  • Increased diversity in SCD representation
  • Opportunities to increase participation of family members as SCD advocates
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The Ambassador Program

Sick Cells’ Ambassador Program is unique in educating and leveraging the skills of diverse advocates as well as serving as a policy hub for the larger sickle cell community including other SCD organizations. Sick Cells has a diverse network of patient advocates that we connect to current events.

What We’ve Learned in from Working in the Community

An increased need to:

  • Recruit diverse ambassadors from the SCD community to engage with federal and state legislators
  • Educate ambassadors about key policy issues impacting SCD
  • Equip ambassadors with tools for ongoing advocacy at local and federal levels
  • Host ambassador forums

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