California Sickle Cell Resources

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California Sickle Cell Resources Welcome! The sickle cell center grew quickly and was funded by the National Institutes of Health as one of ten Comprehensive Sickle Cell Centers in the country.

This page is managed by CA sickle cell resources (casicklecell.org), led by UCSF Benioff Children's Hospital, and the CA Sickle Cell Data Collection (cascdc.org) program, led by Tracking California, a program of the Public Health Institute The Comprehensive Sickle Cell Center at Children's Hospital & Research Center Oakland was started in 1978 to deliver comprehensive care to children and adults with sickle cell disease. The center has been active in research nationally, conducting large multi-center trials in sickle cell disease and internationally, providing our expertise to programs abroad. Sickle cell disease is complex and requires a comprehensive approach. The care at Children's Hospital is all inclusive, focusing on patients and their families through all of the stages of their lives - from infancy, through adolescence, to a successful adulthood. While pediatric and adult programs have separate staffs, there are also shared staff who bridge the transition to adult care. Center providers are experts in sickle cell disease, transfusion medicine, and bone marrow transplantation. Our hemoglobinopathy laboratory confirms all hemoglobin disorders results for the State of California Newborn Screening Program, and sets standards for other national and international laboratories. Our center collaborates in national studies to promote better treatment for sickle cell disease and is recognized as an innovator for new therapies. The California Sickle Cell Data Collection (SCDC) program is led by Tracking California, a program of the Public Health Institute, in partnership with and overseen by the Centers for Disease Control and Prevention. The SCDC Program aims to improve access to healthcare, reduce health disparities, and increase awareness of the disease by providing data, conducting analyses, and communicating information to SCD partners throughout the state.

About 7,700 Californians are living with sickle cell disease (SCD) every day, but the majority live in highly populated ...
10/13/2026

About 7,700 Californians are living with sickle cell disease (SCD) every day, but the majority live in highly populated areas: Five counties account for two-thirds of Californians with SCD - Alameda, Los Angeles, Riverside, Sacramento, and San Bernardino.

Los Angeles is home to more than one-third of California's SCD population (37% of Californians with SCD reside in LA County) - that's more than 2500 residents who may need access to specialized, lifelong care.

Most Californians with SCD (8 in 10) live in high-vulnerability neighborhoods โ€” places with fewer resources to support ongoing care. These Californians often face challenges with transportation, economic stability, housing, education, language access.

Learn more about who is affected and where Californians with SCD live across the state โžก๏ธ
https://cascdc.org/2026-surveillance-report/

๐Ÿ“ข New Report Released: Sickle Cell Disease (SCD) in CaliforniaWe're proud to share our latest Sickle Cell Disease in Cal...
10/08/2026

๐Ÿ“ข New Report Released: Sickle Cell Disease (SCD) in California

We're proud to share our latest Sickle Cell Disease in California Surveillance Report.

This report identifies more than 7,000 Californians living with SCD across 49 of the stateโ€™s 58 counties and provides one of the most comprehensive pictures of SCD in the state.

Using data from newborn screening, healthcare utilization, insurance, clinical, and vital records, the report examines who is living with SCD in California, the care they receive, and the opportunities to improve outcomes.

Key findings include:
โ€ข More than 7,000 Californians are living with SCD.
โ€ข Most people with SCD are enrolled in Medi-Cal but fewer than half stayed enrolled continuously.
โ€ข Emergency department use remains high, especially among a small group of individuals with the greatest healthcare needs.
โ€ข People with SCD live in nearly every region of California, with the largest populations concentrated in a handful of counties.

Developed with input from clinicians, community advocates, and people living with SCD, this report has data that can inform action to support individuals, families, and communities affected by SCD.

Explore the report โžก๏ธ https://cascdc.org/2026-surveillance-report/

Happy Sickle Cell Awareness Month! โค๏ธThis September, we're recognizing the strength of the sickle cell community across ...
09/23/2026

Happy Sickle Cell Awareness Month! โค๏ธ

This September, we're recognizing the strength of the sickle cell community across California, and the families, advocates, and care teams who support them every day.

Here's how to stay connected with the California Sickle Cell Data Collection (CA SCDC) Program:

๐ŸŒ Our website: www.cascdc.org
Haven't visited yet? Our website is your one-stop-shop, which has our data, publications, briefs, and program resources.

๐Ÿ“Š Interactive data dashboard: https://public.tableau.com/app/profile/tracking.california/viz/CA_Sickle_Cell_Data_Collection1/PopulationDashboard
Curious about SCD trends in California? Explore birth estimates, ER visits, hospitalizations, and more on our interactive, filterable dashboard.

๐ŸŽฌ YouTube: big ideas, short videos

We're turning highlights from past webinars into bite-sized clips. We also have short walk throughs of our program website and on our data-dashboard. Subscribe and watch at www.youtube.com/

05/18/2026

Explore the CA SCDC data dashboard and see how data can help inform care, advocacy, and action for sickle cell communities across California!

Dive into the dashboard and more at cascdc.org.

Join the U.S. Department of Health and Human Services (HHS) Office of Minority Health (OMH) for a two-part roundtable se...
05/08/2026

Join the U.S. Department of Health and Human Services (HHS) Office of Minority Health (OMH) for a two-part roundtable series focused on advancing comprehensive systems of care for (SCD). A comprehensive system of care for provides multidisciplinary, specialized healthcare services to the SCD community across the lifespan.

Part 1: "Understanding the Requirements for Sickle Cell Disease Comprehensive Systems of Care"
When: Thursday May 14, from 2:00-3:30 PM ET
Where: Virtual (link below)
Registration link: https://bit.ly/4ukmWf0

The objectives for Part 1 are to:
โ€ข Identify key elements, current challenges, and emerging best practices of a comprehensive system of care for SCD, including the role of nutrition.
โ€ข Raise awareness about current activities and policies related to comprehensive systems of care for SCD.

For more information about the U.S. Department of Health and Human Services (HHS) Office of Minority Health (OMH) SCD initiatives, please visit https://minorityhealth.hhs.gov/sickle-cell-disease.

05/01/2026

Explore our CA SCDC data dashboard, where we bring sickle cell data into one place to better understand and support communities across California!

๐Ÿ‘‰ Dive into the data here: https://bit.ly/4n4uRuw

This  , weโ€™re recognizing the role public health plays in improving care and support for the sickle cell community.At CA...
04/11/2026

This , weโ€™re recognizing the role public health plays in improving care and support for the sickle cell community.

At CA SCDC, we connect data to action, helping to ensure that resources, services, and policies are informed by the real experiences and needs of sickle cell warriors and their families.

Learn more and explore our work at www.cascdc.org and follow along for more resources and updates! Visit our data dashboard (https://bit.ly/47XIaXo) to learn more about sickle cell disease in California and how this information can support real-world decisions and changes.

04/10/2026

Care should be easier to navigate, not harder.

Enhanced Care Management (ECM) is a care coordination program that helps eligible Medi-Cal members access medical care, mental health services, and social supports like housing and transportation.

Itโ€™s about making care more coordinated, accessible, and supportive, especially for the sickle cell community.

Learn more about this Medi-Cal benefit and explore more resources at www.cascdc.org/policy-inventory-and-data-briefs/

๐Ÿง‘โ€๐Ÿซ New webinar upload: Translating Health Services Research in Sickle Cell Disease to PolicyDr. Jean L. Raphael from Ba...
12/26/2025

๐Ÿง‘โ€๐Ÿซ New webinar upload: Translating Health Services Research in Sickle Cell Disease to Policy

Dr. Jean L. Raphael from Baylor College of Medicine and Texas Children's Hospital breaks down what health services research is, why it matters for sickle cell care, and how we can use data (including social determinants of health) to drive real policy change๐Ÿ’ก๐Ÿ“Š

๐Ÿ”— Watch the full webinar here and share with your network: https://youtu.be/BDgKclqsT0c?si=XARso9j4sB-10h8A

๐Ÿ‘‰ Explore other webinar topics on our YouTube channel : https://www.youtube.com/

๐Ÿ’ฅ Pain care for people living with   is often shaped by stigma, policy barriers, and misconceptions about opioids. In th...
12/08/2025

๐Ÿ’ฅ Pain care for people living with is often shaped by stigma, policy barriers, and misconceptions about opioids. In this previously recorded webinar, Dr. Wally Smith (Virginia Commonwealth University) offers an honest and evidence-based look at opioid prescribing, the difference between dependence and addiction, and why pain requires a nuanced approach.

This is an important topic for providers, caregivers, and community members invested in improving care ๐Ÿ’ช๐Ÿฝ
๐Ÿ”— Watch the full webinar here: https://www.youtube.com/watch?v=4G__J5X9qdo

Address

747 52nd Street
Oakland, CA
94609

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm
Saturday 9am - 5pm
Sunday 9am - 5pm

Telephone

+15104283376

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