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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.

10/01/2025

"My name is Crystal Derrick, I'm 45 years old. I have two children. My son is 24. He's in the Navy and I have a daughter, that's 13. Her name is Josilyn - She is the sickle cell patient. Ms. Josilyn is a dainty young woman, not a lot of meat on her bones, very thin. She's about 90 pounds...but she's strong. She has strong bones and a strong will."

💫 Hear more about the Derrick's and other sickle cell warriors' inspiring stories: https://tinyurl.com/33t3a3cs

📷 Our photoblog lifts up the voices of Californians living with and their caregivers, sharing not only their challenges, but also their triumphs, , and everyday journeys. This community project is about more than raising awareness. It’s about creating space for warriors and families to tell their stories in their own words, sparking conversations that can lead to greater understanding, compassion, and action.

As we close out , we hope these stories remind you that no one walks this path alone and that there is always hope for the journey 🌟

09/25/2025

📖 What is Hemoglobin?

Hemoglobin is an iron-rich protein in red blood cells 🩸 that carries oxygen from the lungs to the body and brings carbon dioxide back to the lungs 🫁 For those living with , changes in can impact the way red blood cells work 💪
Understanding terms like this helps us all better support the sickle cell community and 💜

🔍 Explore more relevant terms from our glossary, policy/data briefs, and resources on our new website: www.cascdc.org

09/23/2025

💡 Did you know? The California Institute for Regenerative Medicine(CIRM) has invested over $43 million in sickle cell research including 3 clinical trials, 2 pre-clinical programs, and basic research, with support from the National Institutes of Health (NIH)’s National Heart, Lung, and Blood Institute (NHLBI).

In this recorded webinar, you’ll learn about:
🔹 CIRM’s research programs
🔹 New approaches in developing curative treatments for
🔹 How patients and communities are integrated into the research process
🔹 Resources for sickle cell patient advocates

Watch the full webinar here: https://youtu.be/n47ooSsjXlE?si=Fk3ID6OgIjSBImE7
*Previously recorded on September 28, 2020

09/18/2025

📢 Webinar Announcement 📢

Women with Sickle: Reproductive Health Matters
September 26, 1pm-2pm ET (10am-11am PT)

🩺 This webinar will equip with practical strategies to navigate discussions about various aspects of in females with .

Webinar presenters will review common menstrual complaints, safe s*x practices, and family planning, including pregnancy prevention and pre-conceptual counseling considerations. They will also review the latest evidence on hormonal therapy and contraception, highlighting the considerations unique to SCD, and share approaches for fostering inclusive, patient-centered conversations. Participants will gain tools to support shared-decision making and improve reproductive health outcomes for women with SCD.

Learn more about the webinar and register➡️: https://register.gotowebinar.com/register/2261598011618379611

09/18/2025

🚫 Myth: People with (SCD) don’t live past 21.
✅ Fact: The vast majority of individuals with live well into adulthood.

Advances in care, research, and community support have changed the outlook for warriors, proving that this myth is outdated and harmful. Let’s keep raising awareness, challenging misinformation, and celebrating the strength of the SCD community 💪🏾💜

09/16/2025

💬 "I'm Wanda Williams, I'll be 75 years old in October. I live in Hayward, California, Northern California. I did not fund out that I actually had , all of these pain crises I was having over the years, until I was like 19 years old."

💫 Hear more about Wanda's and other sickle cell warriors' inspiring stories: https://tinyurl.com/33t3a3cs

📷 Our photoblog lifts up the voices of Californians living with sickle cell disease and their caregivers, sharing not only their challenges, but also their triumphs, resilience, and everyday journeys. This community project is about more than raising awareness. It’s about creating space for warriors and families to tell their stories in their own words, sparking conversations that can lead to greater understanding, compassion, and action.

We hope these stories remind you that no one walks this path alone and that there is always hope for the journey 🌟

09/11/2025

🩸 For many sickle cell warriors, pain management is a daily challenge. But small steps can make a huge difference!

Here are a few practical tips:
💧 Stay hydrated & get enough rest
🌡️ Maintain a comfortable temperature (stay warm in the cold and cool in the heat)
🧘 Try gentle movement, like stretching or yoga
💊 Follow your care plan and stay connected with your care team

Want to hear from and what has worked for them? Check out our storymap highlighting the experiences, challenges, and triumphs of living with : https://storymaps.arcgis.com/stories/184edfa35d2448cb90700141da075a5f

💪🏾 Remember: you’re not alone, support is out there, and every step counts!

09/08/2025

📺 Now on YouTube: COVID-19 Outcomes in Sickle Cell Disease 🩺

When emerged, there was an urgent need to understand how it affected people living with SCD. In this webinar, Ashima Singh, MS, PhD (Assistant Professor, Department of Pediatrics, Medical College of Wisconsinn) shares findings from electronic health records and registry data, including:
📊 Outcomes for individuals with SCD vs. those without SCD
🩸 VTE risk among individuals with SCD hospitalized with COVID-19
🔑 Key risk factors for severe illness in children and adults

👉 Watch the full webinar here: https://www.youtube.com/watch?v=1Yblx3ioLro

09/05/2025

📊 Now live: CA SCDC Data Dashboard!

Get a closer look at how sickle cell disease impacts communities across California with data you can explore, download, and use.

Explore trends in...
🚼 SCD births
🏥 Hospitalizations & ED visits
📈 Acute care utilization
🧑🏽‍🤝‍🧑🏾 Population-based estimates

Start exploring now at https://cascdc.org/

09/03/2025

🎉 We’re excited to share that the CA Sickle Cell Data Collection (CA SCDC) website has a new look!

Our redesigned site makes it easier to access:
ⓘ Information about our program and data
📚 Communication products
🛠️ Tools & resources
🤝 Ways to connect

Whether you’re a healthcare provider, researcher, advocate, or community member, there’s something here for you!

👉 Visit us at https://cascdc.org/

09/03/2025

🎒💼 Back to school or work? For sickle cell warriors, it’s important to know how to self-advocate and make sure your needs are supported.

Here are a few tips:
🗣️ Speak up early - Let teachers, professors, or supervisors know about your needs.
📄 Have a plan - Share medical letters or accommodations if available.
🤝 Build allies - Identify a trusted teacher, coworker, or HR rep who understands your condition.
⏸️ Listen to your body - Don’t hesitate to rest, hydrate, or take breaks!
📞 Know your resources - Keep provider contacts and emergency info handy.

Self-advocacy isn’t always easy, but it ensures you get the support you deserve. You’ve got this! 💪🏾

09/01/2025

September is Sickle Cell Awareness Month! 🩸

All month long, we’ll be sharing all kinds of posts to raise awareness and support our warrior community. Look out for upcoming posts from our SCD Glossary, story maps, events, and other exciting announcements.

Join us in spreading awareness and standing with the sickle cell community 💪🏾

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://casicklecell.org/, http://www.cascdc.org/

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