Sickle Cell Equity
California
Vision Statement
Sickle Cell Equity California
#SaveSickleCellLives
Mission Statement
Our Mission is to build an effective statewide coalition of clinicians, community, and stakeholders to educate, equip, and empower Californians about Sickle Cell Disease, Sickle Cell Trait, and other blood disorders.
Meet
The Team
Community Workgroup
Our group focuses on increasing opportunities for community-based and advocacy stakeholders in California to identify and prioritize public health activities related to SCD and outreach, education, advocacy and community needs. This work is being done in collaboration with the creation and implementation of the CA State Action Plan; to share, coordinate, and collaborate on ongoing activities.
NeDina Brocks-Capla
Sickle Cell Disease Foundation of San Francisco
website: http://www.scaasf.org/
e-mail: crisis@scaasf.org
Policy Workgroup
Our group focuses on identifying and promoting the implementation of federal and state policies that should be pursued that could improve: 1) early identification and follow up of Californians with sickle cell disease and sickle cell trait, and 2) health care delivery for Californians with SCD. Policy areas include those that promote building workforce, improving reimbursement, enhancing surveillance, strengthening sickle cell as a priority within existing state and federal programs and promoting standards for expert Sickle Cell Centers.
Marsha Treadwell, PhD
Director, Northern California, Network of Care for Sickle Cell Disease Co-Principal Investigator and Regional Director, Pacific Sickle Cell Regional Collaborative
e-mail: marsha.treadwell@ucsf.edu
Judith Baker, DrPh, MHSA
Public Health Director, Center for Inherited Blood Disorders Policy Director, Pacific Sickle Cell Regional Collaborative Adjunct Assistant Professor, UCLA Division of Pediatric Hematology/Oncology
e-mail: JudithBaker@mednet.ucla.edu
Tran Le
Grants & Program Coordinator
e-mail: tle@c3dibd.org
Clinical Workgroup
The Clinical Needs Workgroup is a collaboration among healthcare providers and SCD advocates with the aim of identifying feasible solutions to the medical needs of those living with this disease. Access to care, workforce development, provider training, clinical treatment, and outside factors impacting care (such as transportation and housing needs) are all addressed as critical needs in this group.
Susan Paulukonis, MPH
Program Director, California Rare Disease Surveillance Program, California Department of Public Health / Public Health Institute
California Sickle Cell Resources
website: http://www.cehtp.org/page/rare_disease
e-mail: Susan.Paulukonis@cdph.ca.gov
Theodore Wun, M.D., FACP
Associate Dean for Research, School of Medicine Director of the UC Davis Clinical and Translational Science Center Chief, Division of Hematology and Oncology
e-mail: twun@ucdavis.edu
Shalini Vora, MPH
Director of Grants Administration
e-mail: svora@c3dibd.org