Partnership & Sponsors
Global Blood Therapeutics
South San Francisco, California
GBT seeks to improve the lives of those with sickle cell disease by combining focused science with compassion and collaboration. Our deep commitment to partnering and advocating for the sickle cell community is our guiding light. We prioritize listening to and understanding the perspectives, interests and challenges patients face so we can develop important new investigational treatments and support access to care. We work with various stakeholders to transform the quality of the care provided to people with SCD.
GBT is a clinical-stage biopharmaceutical company determined to discover, develop and deliver innovative treatments that provide hope to underserved patient communities.
GBT is developing its late-stage product candidate, Voxelotor (previously called GBT440), for the treatment of sickle cell disease.
GBT Announces Presentation of Six Studies at ASH Supporting Voxelotor Sickle Cell Disease (SCD) Program.
For more info www.gbt.com
Foundation for Sickle Cell Disease Research
Sickle cell disease Expert for patients 17 and older
Primary Care Need a PCP?
We can help.
Patient tailored pain management for children and adults
Foundation for Sickle Cell Disease Research (FSCDR) was founded by Dr. Lanetta Bronté in December 2012 after working closely with the sickle cell community and noticing the extreme lack of care for a disease that affects 3 million people nationwide. Dr. Bronté serves as principal investigator on grants and industry-sponsored trials in sickle cell disease.
The FSCDR is a comprehensive, non-profit organization that provides a platform for researchers, healthcare providers, and those living with sickle cell disease. Working collaboratively with academia, pharmaceutical, biotechnology and community organizations, the best practices are identified to help with the management and future care for sickle cell patients.
We are accepting new patients daily and also offer free screenings. Know your sickle cell status!
UCSF Benioff Children's Hospital
The Sickle Cell Care Coordination Initiative
The Sickle Cell Care Coordination Initiative (SCCCI) seeks to improve care provided to youth and adults with sickle cell disease in Northern California. We are one of 8 programs in the U.S. funded by the National Heart, Lung and Blood Institute (NHLBI) to use implementation science to improve outcomes for individuals with sickle cell disease between the ages of 15 and 45 years.
The SCCCI brings together experts in sickle cell disease clinical care and clinical research, health services research, implementation and participatory research and emergency medicine. Their core team also includes individuals with sickle cell disease, their family members and dedicated community members.
Their aims are:
Increase the number of youth and adults with sickle cell disease who receive preventive care;
Support providers so they increase their adherence with evidence-based guidelines for sickle cell disease care
Support youth and adults with sickle cell disease to access needed resources within their communities to improve their quality of life and quality of care.
The primary goal of the center is to decrease the preventable morbidity and mortality that this population is vulnerable to.
Kimberly Major, MSW, ACSW
Medical Social Worker
Comprehensive Sickle Cell Center
Spread awareness of sickle cell anemia
Provide support to the families coping with a diagnosis of this disease.
“To increase the quality of life for individuals diagnosed with sickle cell disease in California by ensuring expert, unbiased, and comprehensive care.”
Medical system which effectively addresses the unique needs of individuals with sickle cell disease
Patients who are empowered and equipped to advocate for themselves.
To reach this vision, our programs focus on education and awareness for providers, patients, and the general public.
Cayenne Wellness hosts support groups in Southern California.
SICKLE CELL ADULT SUPPORT GROUP OF SOUTHERN CALIFORNIA Group Meeting Reminder 2020
Los Angeles Chapter
First Thursday of every month
6:00 - 8:30 pm
The Wellness Center LA
1200 N State Street, Room 1032
Los Angeles, CA 90033
Nakima Dixon 323.679.3455
Dr. Carolyn Rowley 818-731-5408
January 2 May 7 September 3* (in Los Angeles) February 6 June 4 October 1 March 5 July 2 November 5 April 2 August 6 December 3
American Society of Hematology
American Society of Hematology 2019 guidelines for sickle cell disease: cardiopulmonary and kidney disease.
Networking California for Sickle Cell Care
"The Networking California for Sickle Cell Care Initiative (NCSCC) was developed through advocacy and stakeholder engagement supported by data."
"Provided for in the State of California Budget Act of 2019
The Center for Inherited Blood Disorders and the Sickle Cell Disease Foundation will establish a network of sickle cell disease centers in the local health jurisdictions of Alameda, Fresno, Kern, Los Angeles, Sacramento, San Bernardino, and San Diego
To provide access to specialty care and improve quality of care for adults with sickle cell disease; support workforce expansion for coordinated health services; conduct surveillance to monitor disease incidence, prevalence, and other metrics; create a public awareness campaign; and provide fiscal oversight of the resources."
"Through the passage of the Budget Act of 2019, over the next three years, NCSCC will:
Establish a network of sickle cell disease centers and community organizations in counties where the largest numbers of adults with SCD live to provide access to specialty care and improve quality of care for adults with SCD
Support workforce expansion, among both clinicians and community health workers, to enhance care coordination
Expand surveillance to monitor disease prevalence, healthcare utilization, complications and costs
Conduct outreach and awareness on SCD."
For More Information: Networking California for Sickle Cell Care