This is a companion piece to Did You Know About the Sickle-Cell Cure?
1. Reach federal officials in charge of sickle-cell funding:
Francis Collins, M.D., director, the National Institutes of Health: francis.collins@nih.gov
Susan Shurin, M.D., director, the National Heart, Lung, and Blood Institute: Susan.Shurin@nih.hhs.gov
2. Track federal sickle-cell research and funding:
NIH sickle-cell research-project database
Sickle-cell funding (scroll down to "Sickle Cell Disease")
3. Link with sickle-cell patient communities:
Break Sickle Silence on Facebook
The Sickle Cell Disease Association of America Inc.
Sickle Cell Warriors on Facebook
Sickle Cell Disease Community Advocates Inc.
The SCD Soldier Network Inc. on Facebook
4. Learn how to work with local hospitals for better care:
National Patient Advocate Foundation
5. Check Medicaid eligibility and special programs for children and adults in your state.