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**Challenges for Our Sickle Cell Disease Patients and Communities**

Community-based organizations (CBOs), non-governmental organizations (NGOs), and patient advocacy groups have a long history of supporting the needs of those affected by sickle cell disease (SCD) and promoting awareness about both SCD and sickle cell trait (SCT).

- The current landscape of SCD patient groups consists of various organizations at the national, state, and local levels. Each operates with different structures and focuses on improving the lives of individuals with SCD within their specific areas. However, these groups often lack a unified voice, which hampers their ability to bring about large-scale change for individuals with SCD and SCT.

- While SCD CBOs play a crucial role in the SCD care delivery ecosystem, their efforts are often hindered by insufficient financial resources and infrastructural challenges.

- Lessons learned from patient advocacy models in other rare diseases can provide valuable insights for enhancing the organization and effectiveness of SCD advocacy groups and CBOs.

- To make a significant transition from local-level impact to system-level change, it is essential to restructure the organization of SCD CBOs and patient advocacy groups. Their capabilities need to be clearly defined, and their roles should be integrated within the broader care delivery system.

• Journeys by Grace Global Missions, Inc. is a 501c3 organization.