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The Statewide SCD CBO Collaborative

Cayenne Wellness Center (CWC), a U.S. based 501(c)(3) organization, is dedicated to improving health outcomes and decreasing mortality related to Sickle Cell Disease (SCD). Our mission is to increase the quality of life for individuals diagnosed with sickle cell disease in California by ensuring expert, unbiased, and comprehensive care. This mission is part of a broader vision of (1) a medical system that effectively addresses the unique needs of individuals with sickle cell disease and (2) patients who are empowered and equipped to advocate for themselves.

Our proposed project, The Annual CA Statewide SCD CBO Collaborative is a capacity-building initiative that intends to bring SCD CBOs working in CA with aligned missions and common values to get together annually and identify partnership opportunities that mutually benefit patients living with sickle cell disease. The objective is to identify those CA SCD CBOs that would like to partner and collaborate, to help build their capacity to improve and enhance their ability to achieve its mission and sustain themselves over time and ultimately continue to take care of persons living with SCD. In addition, to meet and share calendars and programs outlined for 2023, and at a minimum that each CA CBO will have partnered and collaborated on at least one (1) program with another CBO.

Our united mission is to eliminate health disparities in the sickle cell community; to educate patient stakeholders that will empower them to advocate for themselves and their loved ones; to educate healthcare providers to utilize evidence-based methods in managing and treating patients with sickle cell disease; and to provide identified resources to the community (i.e., transportation, rental assistance, utility assistance, insurance assistance, etc).

Capacity building, partnership, and collaboration will improve patient education and patient engagement in their care, and patient participation in self-care. For CBO programs, we will have a bigger impact on promoting health education and health literacy among patients and caregivers and have a wider outreach in identifying healthcare providers to participate in education and addressing the needs identified by patients. It’s a win-win for both those living with SCD in CA and the CBOs.

2021: 1st Annual CA Statewide SCD CBO Collaborative
Attendees were: Axis Advocacy, Cayenne Wellness Center, SC101, SCAA-SF,
and SCCAC.
Sponsored by Vertex Pharmaceuticals.

2022: 2nd Annual CA Statewide SCD CBO Collaborative
Attendees: To Be Announced
Sponsored by (Coming soon)