Web Resources

Federal Agencies

Centers for Disease Control and Prevention
http://www.cdc.gov/ncbddd/sicklecell/facts.html

National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov/health/health-topics/topics/sca

Office of Minority Health
https://minorityhealth.hhs.gov/sicklecell

Sickle Cell Disease Toolkit: Social Media & Outreach Resources
(in English and Spanish)

Federal Initiatives

• Registry and Surveillance System for Hemoglobinopathies
  http://www.cdc.gov/ncbddd/hemoglobinopathies/rush.html
• Public Health Research, Epidemiology, & Surveillance for Hemoglobinopathies
  http://www.cdc.gov/ncbddd/hemoglobinopathies/phresh.html
• Healthy People 2020
  https://www.healthypeople.gov/2020/topics-objectives/topic/blood-disorders-and-blood-safety/objectives
• Cure Sickle Cell Initiative:
  https://www.nhlbi.nih.gov/science/cure-sickle-cell-initiative
• National Academy of Science, Medicine, and Engineering: Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action
  http://www.nationalacademies.org/hmd/Activities/SelectPops/AddressingSickleCellDisease/2019-FEB-21.aspx

Providers

• American Society of Hematology
  http://www.hematology.org/

American Society of Hematology’s Benign Hematology Curriculum (BHC) is a series of free, web-based videos designed to supplement education in benign hematology for fellows and other clinicians who wish to learn more about the disorder. Each course focuses on a different benign hematology topic, with the goal of providing fellows with an educational resource that might not be available locally.

http://programs.ashacademy.org/bhc/

Genetics Collaborators

• Western States Regional Genetics Collaborative
  http://www.westernstatesgenetics.org/
• Mountain States Genetics Regional Collaborative
  http://msgrcc.org/index.html

Coordinating Center

• National Institute for Children’s Health Quality
  http://www.nichq.org/
• SCDTDP Congressional Report
  http://sicklecell.nichq.org/resources/scdtdp-congressional-report

State Resources

• California Sickle Cell Resources
  http://casicklecell.org/

Community Based Organizations

• Sickle Cell Disease Foundation of California
  http://www.scdfc.org/
• Sickle Cell Community Advisory Council of Northern California
  http://www.sccac.net/
• Family Voices
  http://www.familyvoices.org/
• Sickle Cell Disease Association of America
  http://www.sicklecelldisease.org/
• Sickle Cell Foundation of Arizona
  https://www.scfaz.org
• Colorado Sickle Cell Association, Inc.
  http://www.coloradosicklecellassociation.org/
• Sickle Cell Anemia Foundation of Oregon, Inc.
  http://sicklecelloregon.org/

Quality Improvement

• Institute for Healthcare Improvement
  http://www.ihi.org/Pages/default.aspx