Strengthening Sickle Cell Disease Advocacy Through Ambassador Training, Fellowship Development, and Policy Mobilization

Background

Sick Cells is focused on strengthening and amplifying the voices of the Sickle Cell Disease (SCD) community through our Ambassador Program, Faces of SCD Storytelling Program, Fellowship Program, and annual Policy Forum. We aim to recruit new Ambassadors and advocates from diverse backgrounds and geographies, deepening strategic partnerships, and enhancing storytelling across digital platforms. We continue to equip Ambassadors and Fellows with tools and resources, training, and mentorship to support effective advocacy at the local, state, and federal levels.

Methods

Sick Cells has utilized the following strategies for the community programs engagement and federal advocacy: [1] Ambassador Program and Faces of SCD Storytelling Program The Sick Cells team recruits Ambassadors and SCD advocates to share their stories through SCD events, national conferences, local meetings, ambassador networks, and social media outreach. These touchpoints with the SCD community are also opportunities to distribute Sick Cells education materials, collect feedback on key issues, and assess audience demographics. Sick Cells utilizes qualitative research methods and provides each interviewer with a standardized questionnaire to begin conversation with the SCD respondents. The questionnaire allows the interviewers to conduct a semi-formal interview. Respondents sign release forms and are informed of how their information will be used. [2] Fellowship Program The program initially started as an internship opportunity in 2021. Sick Cells partnered with University of Illinois Chicago to recruit medical students for the internship program. By 2025, it grew into a Fellowship Program that allowed young professionals to represent Sick Cells across the country at in-person events to share more about the work of the organization and collect stories from the SCD community. [3] Policy Forum Recruited participant through community and social media engagement, including attending local community events, posting on social media, and email communications. Had direct outreach to the community, including 140 phone calls, 200 text messages, and holding a special edition forum as part of Sick Cells regularly scheduled meetings on Congress 101. Sick Cells participated in existing events by attending Rare Disease Week on Capitol Hill and distributing fact sheets and one-pagers to attendees outlining key SCD legislative priorities, held an on-site registration for the Policy Forum, and hosted a luncheon to promote the Policy Forum.

Results

Ambassadors Program: To date, we have 430+ Ambassadors across 34 states, Washington, D.C., and nine countries. The Ambassador Program continues to scale rapidly, sustaining an average annual growth rate of approximately 60 percent. Faces of SCD Storytelling Program: To date, Sick Cells has interviewed 143 participants. Participants were recruited by Sick Cells at events across the country, including California, Illinois, Tennessee, New York, Indiana, and the District of Columbia. Sick Cells has over 18,000 followers on social media, with nearly 260,000 impressions engaging with the stories in 2025. Fellowship Program: In 2025, three Fellows represented Sick Cells at five events and conferences nationwide within a span of two months, connecting directly with individuals and families affected by SCD, sharing critical resources, and helped bring new voices into Sick Cells programs. Policy Forum: In 2025, a total of 222 trained constituents participated in meetings with Congressional offices across 29 states, resulting in 160 meetings with federal legislators, including three member-level engagements. The event had participation from over 100 first-time advocates representing SCD patients, caregivers, providers, and allies.

Conclusions

Through the Ambassadors, Fellowship, and Faces of SCD Storytelling programs,Sick Cells equips individuals with SCD and advocates to share their narratives, access an array of professional development and networking resources, and engage in sustained advocacy. Feedback from the Fellowship Program will be used to expand recruit efforts and participant deliverables in future cohorts. Participation in the 2025 Policy Forum, including significant first-time advocate involvement and direct engagement with federal legislators, highlights growing community mobilization within the SCD community.

Ambassador Program

Faces of SCD Storytelling Program

Fellowship Program