World Wide Web Resources
1. 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 - Health Resources and Services Administration
http://www.mchb.hrsa.gov/programs/sicklecell/index.html
2. 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
3. Providers
- American Society of Hematology
http://www.hematology.org/
4. Genetics Collaborators
- Western States Regional Genetics Collaborative
http://www.westernstatesgenetics.org/ - Mountain States Genetics Regional Collaborative
http://msgrcc.org/index.html
5. Coordinating Center
- National Institute for Children’s Health Quality
http://www.nichq.org/ - SCDTDP Congressional Report
http://sicklecell.nichq.org/resources/scdtdp-congressional-report
6. State Resources
- California Sickle Cell Resources
http://casicklecell.org/
7. 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/ - Andikan Sickle Cell Victory Foundation
https://andikan-svf.org/ - Colorado Sickle Cell Association, Inc.
http://www.coloradosicklecellassociation.org/ - Sickle Cell Anemia Foundation of Oregon, Inc.
http://sicklecelloregon.org/
8. Collective Impact Strategies
- Collective Impact Strategies
http://www.fsg.org/OurApproach/CollectiveImpact.aspx
9. Quality Improvement
- Institute for Healthcare Improvement
http://www.ihi.org/Pages/default.aspx