California Sickle Cell Resources

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 w

ith 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.

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:
• Identify key elements, current challenges, and emerging best practices of a comprehensive system of care for SCD, including the role of nutrition.
• 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!

👉 Dive into the data here: https://bit.ly/4n4uRuw

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

This , we’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.

It’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/

🧑‍🏫 New webinar upload: Translating Health Services Research in Sickle Cell Disease to PolicyDr. Jean L. Raphael from Ba...
12/26/2025

🧑‍🏫 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 change💡📊

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

👉 Explore other webinar topics on our YouTube channel : https://www.youtube.com/

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

💥 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 💪🏽
🔗 Watch the full webinar here: https://www.youtube.com/watch?v=4G__J5X9qdo

How did affect people living with sickle cell disease and sickle cell trait across different states? 🧬In this webinar,...
11/19/2025

How did affect people living with sickle cell disease and sickle cell trait across different states? 🧬

In this webinar, Susan Paulukonis presents findings from the Sickle Cell Data Collection (SCDC) programs in Michigan, Georgia, California, and Tennessee. Discussion includes:
• COVID-19 hospitalizations and deaths among people with and
• Changes in emergency department use before and during the pandemic
• How linked data can inform vaccine outreach, health equity, and better care for sickle cell warriors

📺 Watch the full webinar and more on our YouTube channel: https://www.youtube.com/

*This webinar was previously recorded on October 6, 2022.

🎥 New webinar upload on our YouTube channel!We’re excited to share a previously recorded webinar (December 2018) featuri...
11/04/2025

🎥 New webinar upload on our YouTube channel!

We’re excited to share a previously recorded webinar (December
2018) featuring Dr. Kim Smith-Whitley, Director of the Comprehensive Sickle Cell Center and Clinical Director of the Division of Hematology at the Children's Hospital of Philadelphia.

Dr. Smith-Whitley shares her Patient-Centered Outcomes Research Institute (PCORI)-funded work on how to improve quality of life for youth with sickle cell disease as they move from pediatric to adult care.

Her presentation explores the role of community health workers, mobile apps, and multidisciplinary care models in creating smoother, more empowering transitions for young adults with .

👉 Watch the full webinar on our YouTube channel and learn how data and collaboration can support better care across the lifespan: https://www.youtube.com/watch?v=R73BsQxZvM0

Wishing all our warriors and community members a Happy Halloween! 👻🎃Have fun and stay safe while celebrating! Remember t...
11/01/2025

Wishing all our warriors and community members a Happy Halloween! 👻🎃

Have fun and stay safe while celebrating! Remember to stay warm, hydrate, and take care of your health while enjoying the festivities 💜🕸️

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

Website

http://www.cascdc.org/

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