Sickle Cell Disease
Sickle cell comprehensive care centers, state by state
Roughly 100,000 Americans live with sickle cell disease, and roughly 90% are Black or African-American. The U.S. has the care infrastructure — NHLBI-funded comprehensive centers, universal newborn screening, four FDA-approved disease-modifying therapies, and as of December 2023 two FDA-approved CRISPR gene therapies — but the infrastructure is unevenly distributed and Black patients still face the sharpest edges of care-access inequity: the 18-30 transition gap, undertreated pain crises in the emergency department, and Medicaid coverage variation for the new gene therapies.
These pages document every comprehensive sickle cell care center we can verify, every state's SCDAA chapter + Medicaid coverage status, and plain-language explainers of the topics SCD families actually search for.
Topic guides
Comprehensive centers
What a Sickle Cell Comprehensive Care Center Actually Is — and How to Find One
A comprehensive SCD center brings hematology, pain management, transfusion services, stem-cell transplant, behavioral health, and transition-of-care under one roof.
Newborn screening
Sickle Cell Newborn Screening — Every State Screens, What Happens Next
Every U.S. state has screened newborns for sickle cell disease since 2006, and early identification lets families start penicillin prophylaxis by two months old.
Treatments
Sickle Cell Disease Treatments — Hydroxyurea to CRISPR Gene Therapy
Current FDA-approved sickle cell treatments include hydroxyurea, L-glutamine (Endari), voxelotor (Oxbryta), crizanlizumab (Adakveo), and the two CRISPR gene therapies approved in …
Adult transition
The Sickle Cell Adolescent-to-Adult Transition — Where Mortality Peaks
The transition from pediatric to adult sickle cell care between ages 18 and 30 is the single highest-mortality window in SCD — a gap driven by care fragmentation, insurance churn,…
ER pain crisis
Sickle Cell Pain Crisis in the ER — How to Advocate for Proper Treatment
Sickle cell pain crises are routinely undertreated in emergency departments: Black patients with SCD wait longer for analgesia and are more often suspected of drug-seeking behavio…
Clinical trials
Active Sickle Cell Clinical Trials Recruiting Black Patients
More than 400 active SCD clinical trials are listed at ClinicalTrials.gov — including the post-approval confirmatory trials for Casgevy and Lyfgenia, next-generation gene-editing …
Find resources in your state
Alabama
SCDAA of North Central Alabama
Alaska
No SCDAA chapter
Arizona
SCDAA of Arizona
Arkansas
Sickle Cell Support Services of Arkansas
California
Cayenne Wellness Center (SCDAA of California)
Colorado
Sickle Cell Treatment and Research Center (Colorado)
Connecticut
Citizens for Quality Sickle Cell Care (CT)
Delaware
SCDAA of Delaware Valley
Florida
Sickle Cell Disease Association — Florida
Georgia
SCDAA — Atlanta
Hawaii
No SCDAA chapter
Idaho
No SCDAA chapter
Illinois
SCDAA — Illinois
Indiana
Martin Center Sickle Cell Initiative
Iowa
No SCDAA chapter
Kansas
Uriel E. Owens Sickle Cell Disease Association (KS/MO)
Kentucky
SCDAA — Kentuckiana
Louisiana
SCDAA — Louisiana Chapter
Maine
No SCDAA chapter
Maryland
SCDAA — National Capital Area
Massachusetts
SCDAA — Boston (New England Region)
Michigan
SCDAA of Michigan
Minnesota
Sickle Cell Foundation of Minnesota
Mississippi
Mississippi SCDAA Chapter
Missouri
SCDAA of Greater St. Louis
Montana
No SCDAA chapter
Nebraska
Sickle Cell Disease Foundation of Nebraska
Nevada
Nevada Sickle Cell Foundation
New Hampshire
No SCDAA chapter
New Jersey
SCDAA — New Jersey Chapter
New Mexico
No SCDAA chapter
New York
Sickle Cell Thalassemia Patients Network (NYC)
North Carolina
SCDAA — Piedmont Chapter (NC)
North Dakota
No SCDAA chapter
Ohio
SCDAA — Northwest Ohio (and Central Ohio chapter)
Oklahoma
Supporters of Families with Sickle Cell Disease (Oklahoma)
Oregon
Sickle Cell Anemia Foundation of Oregon
Pennsylvania
SCDAA — Philadelphia / Delaware Valley
Rhode Island
No SCDAA chapter
South Carolina
James R. Clark Memorial Sickle Cell Foundation
South Dakota
No SCDAA chapter
Tennessee
Sickle Cell Foundation of Tennessee
Texas
SCDAA — East Texas (Houston)
Utah
No SCDAA chapter
Vermont
No SCDAA chapter
Virginia
SCDAA — Central Virginia
Washington
Central City Sickle Cell Foundation (WA)
West Virginia
No SCDAA chapter
Wisconsin
SCDAA — Wisconsin
Wyoming
No SCDAA chapter
District of Columbia
SCDAA — National Capital Area
Full directory
Browse every comprehensive care center
Filter by state, pediatric vs. adult, transition program, and CRISPR gene-therapy availability.
Methodology & data sources
Center inclusion: NHLBI Sickle Cell Disease Implementation Consortium (SCDIC) member sites; authorized Casgevy (exa-cel) and Lyfgenia (lovo-cel) treatment centers publicly listed by Vertex Pharmaceuticals and bluebird bio; SCDAA chapter-affiliated pediatric and adult clinics; major academic children's hospitals with a documented pediatric hematology SCD program. Records with missing address or phone render a stub page and are excluded from sitemap indexing until the data is filled in.
State data: SCDAA chapter directory (sicklecelldisease.org/chapters), CDC Sickle Cell Data Collection program (11 participating states publish claims-based prevalence), NHLBI modeling, Baby's First Test newborn-screening panel lookup, and KFF 50-state tracker of Medicaid gene-therapy coverage.
Refresh cadence: quarterly for center rosters + Medicaid CRISPR coverage, weekly for ClinicalTrials.gov snapshots.
Data refreshed: