Newborn screening program

Parent and Caregiver Handbook for Sickle Cell

A Parent’s Handbook for Sickle Cell Disease - Birth to Age 6 (Part 1, PDF, 2.9 MB)
A Parent’s Handbook for Sickle Cell Disease - Ages 6 - 18 (Part 2, PDF, 2.1MB)

Appendix

Information and Links

Sample Forms, Letters, or Plans

California Department of Public Health programs

Filing a Complaint

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, published by The National Academies, states that “persistent discrimination in the health care system and racism in society at large” have contributed to sickle cell disease receiving relatively little attention and few resources from the scientific, clinical, and public health communities.

Speak Up™ Against Discrimination is a patient safety campaign from The Joint Commission. This campaign tells you how to stand up for your rights and file a complaint when experiencing discrimination in health care.

You can file a complaint with the state if your rights were denied at a health care facility: Cal Health Find Database.

You can file a complaint with the federal government if your rights were denied: U.S. HHS Complaint Portal Assistant.

You can file a complaint about your health insurance plan if your rights were denied: California Department of Managed Health Care.

Additional Resources

California or regional sickle cell organizations and campaigns

Research and clinical trials

Pain

r-FLACC (revised FLACC) Pain Rating Scale for Children (PDF) - a tool to help a family describe and assess a child's pain
Sickle Cell Disease and Pain - Nationwide Children's

Transition

Got Transition
Transitioning Your Medical Care: Sickle Cell Disease - Nemours Teen Health
Stepping Up: A 2-part video series about transition - Centers for Disease Control and Prevention (CDC). Kevin and Calvanay, two young adults with SCD, share their experience transitioning to adult care and how they've overcome challenges related to transitioning with SCD. Spanish transcripts of the videos are available online.