Sickle Cell Disease Foundation

Experimental gene therapy for the treatment of sickle cell disease receives development funding: https://bit.ly/3jectR7

In 2019, CA committed $15 million for adult #sicklecell treatment programs statewide and granted funds to create the Networking California for Sickle Cell Care Initiative. Today, the #NCSCC provides access to specialty care for adults with sickle cell disease, supports workforce expansion for coordinated health services, and conducts surveillance to monitor disease prevalence. #NeglectedNoMore sicklecellcare-ca.com

"This program is only the start of addressing decades of neglect. We can’t dance around the elephant in the room anymore. It’s time to tackle these issues face-to-face with patients and it’s time our voices are finally heard, says Jennifer Fields, Implementation Strategist at the Sickle Cell Disease Foundation. #NeglectedNoMore To learn more about the #NCSCC, visit: sicklecellcare-ca.com.

The Networking California for Sickle Cell Care Initiative is a first-of-its-kind program that offers a continuum of care for adults with #sicklecell disease in CA. In its first year, three new adult sickle cell disease clinics were launched in San Diego, Kern, and Sacramento counties. We’re excited to continue our partnership with #NCSCC and announce the launch of its new public awareness campaign for adults with sickle cell disease, #NeglectedNoMore: https://prn.to/2UB9sjt

Approximately 1 in 365 Black children are born with sickle cell disease. "The public needs to be made aware of how the health-care system is failing these child...ren," says Gary Freed, M.D., a pediatrician and researcher at the University of Michigan C.S. Mott Children’s Hospital. https://blackhealthmatters.com//we-need-to-improve-care-f/ See more

On #WorldSickleCellDay, we celebrate the progress that’s been made in #sicklecelldisease treatment and research while also recognizing that better access to care and therapy is vital. Visit sicklecellcare-ca.com to read our plan to expand CA’s network of adult sickle cell disease clinics.

Sickle Cell Disease affects approximately 100,000 Americans in the United States, and hundreds of millions of people are affected by both #SickleCellDisease and #SickleCellTrait worldwide. This #WorldSickleCellDay, we invite you to visit our website at sicklecellcare-ca.com to find out how we can help you, or a loved one, at our regional network of adult Sickle Cell Disease specialty clinics in California.

In honor of Juneteenth and Grandmother of Juneteenth Opal Lee’s activism, here’s the story of her decades-long fight to establish it as a federal holiday: https://n.pr/35zIsTF.

To commemorate World Sickle Cell Day, we’re calling on you to help bring awareness to sickle cell disease by sharing the digital resources and messages from our social media toolkit. Show your support: https://bit.ly/3iWjZQf

For over 60 years, we’ve provided education and life-enhancing programs for individuals living with sickle cell disease. From newborns to adults, we have programs and services that can support your family. To learn more, visit: https://bit.ly/3gma2bQ

Did you know that we have a sickle cell disease clinic for adults living in Greater Los Angeles? It offers specialized sickle cell care and is open from 9am-5pm on Tuesdays and Thursdays. Contact member services today to see if you qualify: https://bit.ly/3w3QiRd.

People with sickle cell disease can have active social lives and enjoy most of the activities that other people do. Here are a few tips that will help you, or someone you know with sickle cell disease, stay as healthy as possible. To learn more tips for healthy living, visit: https://bit.ly/3g3fmC7.

Parents of infants identified with sickle cell trait, hemoglobin C trait, and hemoglobin D trait can get FREE trait counseling and family testing. For more information about hemoglobin traits, call the CA Newborn Screening Sickle Cell Trait hotline at 1-866-954-2229 to speak to a certified trait counselor. https://bit.ly/3zaYf8S