Building partnerships in the community
Building stronger partnerships with SCD organizations
Helping patients with sickle cell disease (SCD) identify resources can build trust and understanding as they work with you to manage their condition
Beyond the patient's healthcare team, there is an entire SCD community, including advocacy organizations, who can help patients with SCD. These organizations can provide patients with ongoing support and resources.
Explore selected* organizations below for more information:
- As One Foundation
- Axis Advocacy
- Cayenne Wellness Center
- The Foundation for Sickle Cell Disease Research
- Greater Boston Sickle Cell Disease Association
- Martin Center for Sickle Cell Initiative
- Maryland Sickle Cell Disease Association
- National Organization for Rare Disorders
- Next Step
- Piedmont Health Services and Sickle Cell Agency
- Sick Cells
- Sickle Cell 101
- Sickle Cell Anemia Awareness of San Francisco
- Sickle Cell Association of America – Michigan Chapter
- Sickle Cell Association of Houston
- Sickle Cell Association of New Jersey
- Sickle Cell Association of Texas Marc Thomas Foundation
- Sickle Cell Community Consortium (SCCC)
- Sickle Cell Disease Association of America (SCDAA)
- Sickle Cell Disease Association of Illinois
- Sickle Cell Disease Coalition
- Sickle Cell Disease Foundation of California
- Sickle Cell Foundation of Georgia
- Sickle Cell Foundation of Minnesota
- Sickle Cell Foundation of Tennessee
- Sickle Cell Thalassemia Patients Network
- Sickle Cell Warriors
- Supporters of Families with Sickle Cell Disease
- Tackle Sickle Cell Disease
- Uriel E Owens Sickle Cell Disease
- William E. Proudford Sickle Cell Fund
*Not an exhaustive list of all SCD organizations.
Informational Resources
- American Society of Hematology
- Centers for Disease Control and Prevention
- Genetic and Rare Disease Information Center — National Institute of Health
- Medline Plus: Genetics
- National Heart, Lung, and Blood Institute — National Institutes of Health
- National Human Genome Research Institutes — National Institute of Health
Links are provided for informational purposes only. We do not make or imply any endorsement of external websites.
You need a support system. You need a supportive group of people to help you do what you need to do in life. So it’s just making sure you have that support system to help you navigate this thing called life, now with a chronic illness.”
Abena O. Appiah-Kubi, MD, MPH