Resources
Guidelines
Standard of Care Guidelines for Patients with SCD
These guidelines were produced by the University of California, San Francisco Sickle Cell Center of Excellence (UCSF SCCoE) with funding from Networking California for Sickle Cell Care and UCSF Benioff Children’s Hospitals. UCSF created these Standard of Care Guidelines using the most up to date evidence-based recommendations from multiple well renowned sources such as the American Society of Hematology, American Thoracic Society, British Society for Hematology, and others. The authors compiled, to the best of their knowledge, all available evidence and have incorporated practices that are also derived from their experiences.
The Standard of Care Guidelines for Patients with Sickle Cell Disease (2024) is reviewed regularly and updated by the sickle cell team at the UCSF SCCoE. The UCSF SCCoE encourages suggestions and recommendations to these guidelines that should be submitted to: sicklecellcenterofexcellence@ucsf.edu. Images and text from these guidelines can only be used with the written permission of the UCSF SCCoE.
The most updated version and more information are available at https://ucsf.box.com/s/jdwyfjl5cj7rrwxajf7842js6ka0ul45
Sickle Cell Awareness Month Toolkit - September 2024
Recognized every September since 1983, Sickle Cell Disease Awareness Month was established to increase awareness about sickle cell disease, the most common inherited blood disorder in the United States, affecting approximately 100,000 Americans. By raising awareness and bringing sickle cell disease to the attention of our community, providers, and policymakers, we help ensure sustainable and equitable access to care, and treatment. Networking California for Sickle Cell Care in bringing greater awareness to sickle cell disease.
Below you’ll find the Sickle Cell Disease Awareness Month Toolkit, which includes resources to help individuals better understand sickle cell disease, advocate for sickle cell disease care, and to get involved on social media.
Parent and Caregiver Handbook for Sickle Cell
The California Department of Public Health’s Genetic Disease Screening Program is pleased to announce the release of the Parent and Caregiver Handbook for Sickle Cell – a revision of the A Parent’s Handbook for Sickle Cell Disease, Part I and II. The handbook is a comprehensive reference manual and covers birth to age 18 years.
The handbook was written by physicians and other medical providers at UCSF Benioff Children’s Hospital Oakland Sickle Cell Center of Excellence with input from families. Parent and caregiver focus groups had requested more concrete information on disease management and navigating the health care system in this edition, which includes an updated research and treatments chapter and a new chapter on empowering families when they face bias and discrimination in health care.
To access and download the digital handbook and appendices, please visit our Parent and Caregiver Handbook for Sickle Cell web page. The handbook is available both in English (PDF) and Spanish.
Contact GDSPCommunications@cdph.ca.gov with questions or to order printed copies of the English handbook.