Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020)

Chapter: Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States

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Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Appendix K

Sickle Cell Community-Based Organizations and Patient Groups in the United States

State Sickle Cell Associations, Nonprofits, and Foundations
National Resources**
  • Sickle Cell Disease Association of America
Professional Organization Resources
  • American Society of Hematology (ASH), Sickle Cell Adult Provider Network, American Society of Pediatric Hematology/Oncology, International Association of Sickle Cell Nurses and Professional Associates, Emergency Department Sickle Cell Care Coalition
  • Foundation for Sickle Cell Disease Research
  • Sickle Cell Disease Coalition (by ASH)
  • Sickle Cell Disease Council for CHANGE (supported by Pfizer Rare Disease)
Alabama
  • Alabama State Sickle Cell Disease Association
  • North Alabama Sickle Cell Foundation–Huntsville*
  • Sickle Cell Disease Association of America–Central Alabama*
  • Sickle Cell Disease Association of America–Mobile*
  • Sickle Cell Disease Association–West Alabama, Northport*
  • Sickle Cell Foundation of The River Region Montgomery*
  • Southeast Alabama Sickle Cell Association–Tuskegee*
  • Tri County Sickle Cell Association, Inc.
Arizona
  • Sickle Cell Anemia Society of Arizona
Arkansas
  • Arkansas Foundation for Sickle Cell Support
  • Future Builders–Sickle Cell Awareness, Education, and Outreach Initiative

continued

Page 476 Cite Bookmark
Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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State Sickle Cell Associations, Nonprofits, and Foundations
California
  • Axis Advocacy
  • Cayenne Wellness Center*
  • Genetic Disease Resource Center of California State Department of Health Services
  • Hina Patel Foundation
  • The K.I.S. Foundation
  • Pacific Sickle Cell Regional Collaborative
  • Sickle Cell Anemia Awareness San Francisco
  • Sickle Cell Community Advisory Council of Northern California
  • Sickle Cell Community Health Network
  • Sickle Cell Disease Association of America–San Diego*
  • Sickle Cell Disease Foundation of California
  • Sickle Cell Disease Foundation of Orange County
  • Tracking California’s Sickle Cell Data Collection Program
  • World Sickle Cell Federation
Colorado
  • Colorado Department of Public Health and Environment Laboratory Services Division
  • Colorado Sickle Cell Association–Denver*
  • Colorado Sickle Cell Foundation
  • Sickle Cell Adult Provider Network
Connecticut
  • Citizens for Quality Sickle Cell Care–New Britain/Hartford*
  • Sickle Cell Disease Association of America–Southern Connecticut–Bridgeport/New Haven*
  • Sickle Cell Disease Association of America–Southern Connecticut–Stamford Office*
  • Southern Regional Sickle Cell Association
Delaware
  • Tova Community Health*
  • William E. Proudford Sickle Cell Fund, Inc.
Florida
  • Sickle Cell Association of Hillsborough County*
  • Sickle Cell Disease Association of America–Broward County–Ft. Lauderdale*
  • Sickle Cell Disease Association of America–Dade County, Miami*
  • Sickle Cell Disease Association of America–Escambia and Santa Rosa Counties, Pensacola*
  • Sickle Cell Disease Association of America–Northeast Florida*
  • Sickle Cell Disease Association of America–Palm Beach County and Treasure Coast*
  • Sickle Cell Disease Association of America–St. Petersburg*
  • Sickle Cell Disease Association of America–Tri-County, Orlando*
  • Sickle Cell Disease Association of America–Upper Pinellas, Pasco, Hernando Counties*
  • Sickle Cell Disease Association of America–Volusia County–Daytona Beach*
  • Sickle Cell Disease Association of America of Levy/Marion Counties–Ocala*
  • Sickle Cell Disease Association of Florida–Tampa*
  • Sickle Cell Disease Association of Tri-County–Orlando*
  • Sickle Cell Foundation of the Big Bend
  • Sickle Cell Foundation–Tallahassee*
Georgia
  • Huisman Sickle Cell Foundation of Augusta, Georgia
  • Sickle Cell Foundation of Georgia–Atlanta*
Illinois
  • Have a Heart for Sickle Cell Anemia Foundation
  • Sickle Cell Disease Association of America Illinois–Chicago*
Page 477 Cite Bookmark
Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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State Sickle Cell Associations, Nonprofits, and Foundations
Indiana
  • Martin Center, Inc.–Indianapolis*
Kansas
  • Uriel E. Owens Sickle Cell Disease Association of the Midwest
Kentucky
  • Christian County Sickle Cell Foundation
  • The Sickle Cell Association of Kentuckiana
Louisiana
  • Baton Rouge Sickle Cell Anemia Foundation
  • Louisiana Regional Sickle Cell Foundation Alexandria Sickle Cell Anemia Foundation
  • Northeast Louisiana Sickle Cell Anemia Foundation–Monroe*
  • Sickle Cell Disease Association of America–Northwest Louisiana*
  • Southwest Louisiana Sickle Cell Anemia, Inc.–Lake Charles*
Maryland
  • Howard University Center for Sickle Cell Disease
  • Lauren D. Beck Sickle Cell Foundation
  • Maryland Sickle Cell Disease Association*
  • Sickle Cell Disease Association of America, Inc.*
  • William E. Proudford Sickle Cell Fund, Inc.
Massachusetts
  • Greater Boston Sickle Cell Disease Association, Inc.*
  • New England Pediatric Sickle Cell Consortium
Michigan
  • Sickle Cell Disease Association of America, Michigan–Detroit*
Minnesota
  • Sickle Cell Disease Advocates of Minnesota
Mississippi
  • Cure Sickle Cell Foundation
  • Mississippi Sickle Cell Foundation
Missouri
  • Adult Sickle Cell Disease Treatment Program
  • Bureau of Genetics and Healthy Childhood
  • Missouri Department of Health and Senior Services
  • Sickle Cell Association of St. Louis*
Nevada
  • Nevada Childhood Cancer Foundation–Las Vegas*
New Jersey
  • Sickle Cell Disease Association of New Jersey–Newark*
New Mexico
  • Sickle Cell Council of New Mexico–Albuquerque*
  • University of New Mexico Children’s Hospital
New York
  • Falling Angels Sickle Cell Foundation*
  • Queens Sickle Cell Advocacy Network–Queens Village*
  • Sickle Cell Thalassemia Patients Network*
North Carolina
  • Bridges Pointe Sickle Cell Foundation–Durham*
  • Community Health Interventions and Sickle Cell Agency, Inc.–Fayetteville*
  • North Carolina Sickle Cell Syndrome Program
  • Operation Sickle Cell
  • Piedmont Health Services and Sickle Cell Agency–Greensboro*
  • Sickle Cell Disease Association of America–Eastern North Carolina Chapter–Jacksonville*
  • Sickle Cell Partners of the Carolinas–Charlotte NC
Ohio
  • American Sickle Cell Anemia Association*
  • Dayton/Springfield Sickle Cell Affected Families Association
  • Kincaid’s Kindred Spirits
  • Ohio Sickle Cell and Health Association–Columbus*
  • Sickle Cell Awareness Group of Greater Cincinnati
  • Sickle Cell Project of Northwest Ohio

continued

Page 478 Cite Bookmark
Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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State Sickle Cell Associations, Nonprofits, and Foundations
Oklahoma
  • Oklahoma Sickle Cell Warriors Foundation
Oregon
  • Sickle Cell Anemia Foundation of Oregon–Portland*
Pennsylvania
  • Children’s Sickle Cell Foundation, Inc.–Pittsburgh*
  • Ryan Clark’s Cure League
  • Sickle Cell Disease Association of America–Philadelphia/Delaware Valley Chapter*
  • Sickle Cell Society, Inc.–The Murray-Irvis Genetic Disease Center
  • The South-Central PA Sickle Cell Council–Harrisburg*
South Carolina
  • C.O.B.R.A. Sickle Cell Program
  • James R. Clark Memorial Sickle Cell Foundation–Columbia*
  • Louvenia D. Barksdale Sickle Cell Anemia Foundation
  • Orangeburg Area Sickle Cell Foundation
Tennessee
  • The Sickle Cell Foundation of Tennessee–Memphis*
Texas
  • The Otis Uduebor Sickle Cell Foundation
  • Sickle Cell Association of Houston*
  • Sickle Cell Association of Texas–Marc Thomas Foundation*
  • Sickle Cell Disease Association of America of Tarrant County–Fort Worth*
Virginia
  • Living with Sickle Cell RVA
  • Sickle Association Inc.–Norfolk*
  • Sickle Cell Association–Hampton Roads Chapter
  • Sickle Cell Association of the Peninsula
Washington
  • Metropolitan Seattle Sickle Cell Task Force
  • Northwest Sickle Cell Collaborative
Washington, DC
  • Sickle Cell Association of the National Capital Area
Other Advocacy Organizations
  • Bold Lips for Sickle Cell
  • MTS Sickle Cell Foundation
  • Sickle Cell 101
  • The Sickle Cell Community Consortium
  • Sickle Cell Warriors
  • Sick Cells
Virtual Only Organization
  • Chade SC (Sickle Cell Disease Network)
  • Excelling with Sickle Cell
  • Supporters of Families w/Sickle Cell Disease, Inc.

* A member of the Sickle Cell Disease Association of America.

** National Resources as identified on the Centers for Disease Control and Prevention’s website.

NOTES: List compiled on October 7, 2019. The committee was unable to identify sickle cell associations, nonprofits, or foundations for the following states: Alaska, Hawaii, Idaho, Iowa, Maine, Montana, Nebraska, New Hampshire, North Dakota, Rhode Island, South Dakota, Utah, Vermont, West Virginia, Wisconsin, and Wyoming. Organizations listed here are not all-inclusive and represent organizations that were identifiable on public online platforms. Although the committee is aware of additional groups, there is no available comprehensive list or registry of sickle cell disease community-based organizations or advocacy groups.

SOURCES: CDC, 2019; SCDAA, 2019.

Page 479 Cite Bookmark
Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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REFERENCES

CDC (Centers for Disease Control and Prevention). 2017. Sickle cell disease (SCD): National resources directory. http://medbox.iiab.me/modules/en-cdc/www.cdc.gov/ncbddd/sicklecell/map/map-nationalresourcedirectory.html (accessed August 28, 2020).

SCDAA (Sickle Cell Disease Association of America). 2019. Find member organizations. https://www.sicklecelldisease.org/support-and-community/find-member-organizations (accessed August 28, 2020).

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Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Page 478 Cite Bookmark
Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Page 479 Cite Bookmark
Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Suggested Citation: "Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Next Chapter: Appendix L: Summary Table of Strategic Plan and Blueprint for Sickle Cell Disease Action
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