Sickle Cell Disease Foundation Of California

Sickle Cell Counselor Training and Certification Program SCCTCP The SCCTCP advances workforce development under the California Genetic Disease Screening Program by training and certifying health professionals in hemoglobinopathy counseling. Using CDPH-approved curriculum materials and standardized assessments SCDF delivers training through Modules I IIA IIB and III twice annually and evaluates participant outcomes. This program ensures that counselors and community health professionals are equipped to provide accurate culturally competent education and support to families across California.

HRSA California Sickle Cell Care and Support Network CCSCN Under the HRSA CCSCN initiative SCDFC advanced system-level improvements in access to care for individuals with SCD by coordinating a multidisciplinary network of hospitals clinics and community partners. The Foundation led efforts to expand CHW services improve data reporting through the SC CARES platform and promote statewide education outreach and advocacy. Program outcomes included increased linkage to primary and specialty care enhanced family engagement and broader awareness of sickle cell disease throughout Californias healthcare system.

HRSA Pacific Sickle Cell Regional Collaborative PSCRC Through the PSCRC grant funded by the Health Resources and Services Administration HRSA SCDFC strengthened care coordination and transition services for adolescents and young adults with Sickle Cell Disease SCD across California. The Foundation expanded the statewide network of clinical and community-based sites known as Networking California for Sickle Cell Care NCSCCto enhance access to comprehensive SCD care. Achievements included developing care transition protocols integrating community health workers CHWs into clinical teams and implementing patient-centered data collection tools to improve quality of care and health outcomes.

State-Funded Networking California for Sickle Cell Care Through state funding administered by the California Department of Public Health SCDFC partnered with the Center for Inherited Blood Disorders CIBD and The Hills Tandem LLC THT led the expansion of the Networking California for Sickle Cell Care program creating a coordinated network of hospitals community health centers and community-based organizations that provide comprehensive SCD care. Accomplishments include establishing twelve 12 adult specialty clinics throughout California embedding CHWs in clinical settings to support patient navigation developing standardized care coordination protocols and conducting statewide CHW training and leadership development. These efforts significantly increased access to care reduced emergency department utilization and strengthened long-term sustainability through partnerships with Medi-Cal managed care plans. Workforce Development Through a Comprehensive Sickle Cell Training and Certification Program for Community Health Workers The Sickle Cell Disease Foundation SCDF has established a statewide Comprehensive Sickle Cell Training and Certification Program designed to strengthen the healthcare workforce by equipping Community Health Workers CHWs with the specialized knowledge and skills required to effectively support individuals and families living with sickle cell disease SCD. This program builds professional competency enhances career advancement opportunities and promotes sustainability of the CHW workforce within clinical and community settings. Through a structured multi-tiered curriculum CHWs receive education on the biology and management of SCD crisis prevention and intervention social determinants of health patient navigation and culturally responsive communication. The program includes online e-learning modules in-person workshops mentorship and continuing education opportunities that align with state and national standards for CHW practice. Training is delivered in collaboration with medical experts mental health professionals and experienced CHW leaders to ensure real-world application and clinical relevance. Upon completion participants receive certification recognizing their expertise in sickle cell care coordination enabling them to integrate into multidisciplinary healthcare teams and provide essential patient-centered support. This certification not only professionalizes the CHW role but also facilitates eligibility for reimbursement through Medi-Cal and other managed care systems. Outcomes and Impact To date SCDFs training and certification program has prepared more than 40 CHWs statewide many of whom now work in hospital-based and community care settings as part of the Networking California for Sickle Cell Care NCSCC network. These trained CHWs have contributed to improved patient follow-up after hospital discharge increased engagement in preventive care and communication between providers.

YAAM You Are A Marvel Project is a pioneering service that leverages longitudinal Real World Data RWD to enhance health literacy and augment quality of care. The program is dedicated to giving voice to the daily experiences of individuals with Sickle Cell Disease SCD by collecting documenting and visualizing their unique data. Our human centered design approach emphasizes collaboration with patients healthcare providers community health workers data scientists and data visualizers to foster a data service that is accessible and effective. Our first aim is to ensure that YAAMs collected RWD accurately mirrors the patients experience thereby enabling meaningful insights and contributing to improved quality of care. This involves verifying data integrity security and accuracy while adhering to HIPAA regulations identifying data gaps and assessing accessibility for the SCD community. The second aim focuses on creating a service that is usable and beneficial for those living with SCD empowering patients to be active participants in their care decisions. This includes involving patients in the service development process establishing a transparent and patient consented data system creating a visual language and identifying potential obstacles for adoption. The third aim explores the potential of YAAM evolving into an adaptive Learning System LS. This system would identify personalized optimum health activity and biometric ranges alerting when activity deviates from the recommended target. In collaboration with data scientists PHASE 1 deliverables envision the future of YAAM LS while outlining the necessary technical requirements. we aim to understand the integration potential of YAAM data with GENOME data Health Information Exchange data and Social Determinate data which could yield insights into effective treatments at both individual and group levels. We also aim to evaluate the services value proposition among diverse SCD stakeholders and assess potential barriers and risks in alignment with FDA regulations.

These are other grants including but not limited to The Public Health Institute Grant The San Manuel Grant The LA Transportation Grant and The Queenscare Mental Health Grant