The Foundation for Sickle Cell Disease Research
The Foundation for Sickle Cell Disease Research (FSCDR) is a nonprofit operating 15 specialized sickle cell outpatient Centers of Excellence across Florida, delivering clinical care, clinical trial access, and registry-based research, and publishing the Journal of Sickle Cell Disease with Oxford University Press.
- Company typePrivate
- Founded2012
- HeadquartersHollywood, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What The Foundation for Sickle Cell Disease Research does
The Foundation for Sickle Cell Disease Research (FSCDR) is a nonprofit healthcare and research organization founded in 2012 in Hollywood, Florida, operating the first center in the United States dedicated exclusively to sickle cell disease (SCD). It runs a network of 15 Sickle Cell Centers of Excellence across Florida — the state with the highest SCD population in the U.S. — providing specialized outpatient care including infusion therapy, pain management, hydroxyurea treatment, TCD stroke-prevention screening, telemedicine, and wraparound social services (disability support, housing help, food support, and school IEP support) to insured and uninsured patients. Care is delivered by hematologist-oncologists and nurse practitioners specializing in SCD, with the Hollywood flagship operating 24/7 and satellite locations running Monday–Friday; patients can self-book via the dedicated fscdrllc.com portal.
FSCDR's research and platform infrastructure includes a national Sickle Cell Disease Registry with over 2,600 participants, a mortality registry capturing autopsy and cause-of-death data, the Journal of Sickle Cell Disease published in partnership with Oxford University Press (archive from 2013), and an active multi-sponsor clinical trial program covering investigational therapies including etavopivat, anumigilimab, IMR-687, crizanlizumab, Oxbryta, SANGUINATE, AXA4010, CSL889, PF-07209326, and IW-1701. Strategic academic and federal partnerships with NIH (ISAAC initiative), Duke University, VCU, Augusta University, and the University of Miami underpin workforce education, the Clinical and Research Advisory Group (CRAG) model, and longitudinal research; the Annual Sickle Cell Disease Research and Educational Symposium (now in its 50th national-meeting cycle) convenes the global SCD community.
The organization generates revenue from three streams: donations and charitable contributions (called out as the primary funding mechanism on the donate page), clinical service fees from insurance and Medicaid — including charity care for uninsured and underinsured patients — and pharma-sponsored clinical trial site fees with streamlined IRB and contract approval. The operating subsidiary Sickle Care and Research Network, FSCDR, LLC handles clinical operations. Founder Dr. Lanetta Bronté serves as President and Chief Health Officer; the board is chaired by Avery A. Dial, Esq. Governance jurisdiction is Florida.
The Foundation for Sickle Cell Disease Research firmographics
Firmographics- Name
- The Foundation for Sickle Cell Disease Research
- Legal name
- The Foundation for Sickle Cell Disease Research
- Website
- https://fscdr.org
- Company type
- Private
- Founded year
- 2012
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The Foundation for Sickle Cell Disease Research (FSCDR) is a nonprofit operating 15 specialized sickle cell outpatient Centers of Excellence across Florida, delivering clinical care, clinical trial access, and registry-based research, and publishing the Journal of Sickle Cell Disease with Oxford University Press.
- Ownership category
- akta.pro rank
The Foundation for Sickle Cell Disease Research industry classification
Industry- Product category
- Specialty Hematology Healthcare Services
- NAICS
- Offices of Physicians (except Mental Health Specialists) (621111), Scientific Research and Development Services (5417)
- SIC
- Services-Offices & Clinics Of Doctors Of Medicine (8011), Services-Health Services (8000)
- akta.pro primary industry
- Virtual Urgent Care & On-Demand Teletriage Services (HLAFADAJ)
Keywords
Where The Foundation for Sickle Cell Disease Research is headquartered
LocationHeadquarters
- HQ city
- Hollywood
- HQ country
- United States
- HQ region
- North America
Offices3 records
Markets served
The Foundation for Sickle Cell Disease Research business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Technology or R&D, Marketing or Sales, Infrastructure
Revenue model
- Donations and Charitable Contributions: The organization relies heavily on donations from individuals, corporations, and foundations to fund critical care, wraparound services (disability coverage, housing, food support, school IEP support), and research programs. Donations are the primary revenue mechanism mentioned on the donate page.
- Clinical Services Revenue: Revenue generated from providing medical care at 15 Sickle Cell Centers of Excellence across Florida, including infusion therapy, pain management, and telemedicine services. The organization accepts insurance and serves uninsured and underinsured patients.
- Clinical Trial Partnerships: Collaborates with pharmaceutical companies and research sponsors to conduct clinical studies. FSCDR offers quick IRB approval, budget approval, and contract negotiation, with the organization serving as a clinical trial site for multiple investigational therapies.
Go-to-market motion3 records
Distribution channels5 records
Marketing channels8 records
The Foundation for Sickle Cell Disease Research product offering
Product offeringCore offering
FSCDR delivers specialized outpatient sickle cell disease care across a network of 15 Sickle Cell Disease Centers of Excellence in Florida, providing infusion therapy, pain management, telemedicine, and wraparound services. It runs an active clinical trials program serving as a trial site for investigational SCD therapies, and underwrites its mission through a national Sickle Cell Disease Registry with over 2,600 participants, the peer-reviewed Journal of Sickle Cell Disease (published with Oxford University Press), and workforce education programs for clinicians.
Product overview
The Foundation for Sickle Cell Disease Research (FSCDR) operates as a healthcare and research organization offering a comprehensive suite of services for sickle cell disease. The organization is built around a core network of 15 Sickle Cell Disease Centers of Excellence across Florida, providing direct patient care, infusion therapy, and pain management. This clinical infrastructure is supported by a Sickle Cell Disease Registry with over 2,600 participants, enabling research and data collection. FSCDR publishes The Journal of Sickle Cell Disease in partnership with Oxford University Press and hosts an annual symposium for scientific exchange. The organization also conducts active clinical trials, provides workforce education programs, offers bereavement support through its mortality initiative, and delivers telemedicine services for remote patient access.
Differentiator
Problem solved
Functional benefit
Brands
- Sickle Cell Centers of Excellence: Network of 15 Sickle Cell Disease Centers of Excellence across Florida providing specialized sickle cell care, treatment, and support
Products and services
- Sickle Cell Disease Centers of Excellence A network of 15 specialized outpatient healthcare centers across Florida staffed by hematologist-oncologists and nurse practitioners, providing expert sickle cell disease treatment including infusion therapy, pain management, telemedicine, lab services, TCD stroke-prevention screening, and coordinated wraparound services for Sickle Cell Warriors.
- Clinical Trials Program
Quantifiable outcome
- Patients experience less pain, fewer hospitalizations, and faster recovery through specialized SCD care at FSCDR centers.
- +3 more outcomes
Companies that use The Foundation for Sickle Cell Disease Research
Customer profileNamed customers10 records
Segments5 records
Ideal customer profiles4 records
The Foundation for Sickle Cell Disease Research technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature5 records
The Foundation for Sickle Cell Disease Research partnerships and signals
Strategic signalPartnerships
Nine partnerships are on record, tiered core and minor.
- Oxford University PresscoreOxford University Press publishes the Journal of Sickle Cell Disease in partnership with FSCDR. The journal serves as the definitive academic platform for SCD research globally, connecting the worldwide scientific community and sharing knowledge on the understanding, treatment, and cure of sickle cell disease.
- Pharmaceutical clinical trial sponsors (multiple)coreFSCDR partners with pharmaceutical companies and research sponsors to conduct clinical trials including studies on etavopivat ( Forma / Ionis ), anumigilimab (CSL324), IMR-687, crizanlizumab, Oxbryta, SANGUINATE, AXA4010, CSL889, PF-07209326, IW-1701 (Olinciguat), and others. FSCDR offers streamlined trial infrastructure with quick IRB, budget, and contract approval.
- NIH-funded ISAAC Initiative PartnerscoreThe Clinical and Research Advisory Group (CRAG) was established in 2016 as part of the NIH-funded Improving Sickle Cell Care in Adolescents & Adults in Chicago (ISAAC) initiative. Participants include researchers, healthcare providers from four Illinois institutions, implementation science consultants, patients, stakeholders, with additional collaboration involving partners in South Carolina.
- Tertiary Medical Center (600+ beds)minorFSCDR collaborated with a tertiary medical center (600+ beds) serving an underserved population to implement a standardized sickle cell admission order set in the electronic medical record. The quality improvement project tracked outcomes quarterly for hospitalized SCD pain crisis patients, demonstrating reduced length of stay from 4.58 to 3.08 days.
- Broward County Convention CenterminorThe Broward County Convention Center in Fort Lauderdale, FL serves as the venue for the Annual Sickle Cell Disease Research and Educational Symposium. The venue hosts the in-person component of the hybrid event.
- Duke UniversitycoreDr. Charity I. Oyedeji, MD serves as the 2027 Scientific Chair of the FSCDR Symposium. She is Assistant Professor of Medicine, Division of Hematology at Duke University, leading the SILVR Study and SickleFit Study focused on improving outcomes for adults living with SCD.
- University of Miami Miller School of MedicineminorDr. Lanetta Bronté previously held a faculty appointment as Associate Professor in the Department of Public Health Sciences at the University of Miami Miller School of Medicine. The organization was previously affiliated with the university as part of Dr. Bronté's academic career.
- Virginia Commonwealth University (VCU)coreDr. Wally R. Smith serves as Professor, Scientific Director of VCU Center on Health Disparities, and Director of VCU Adult Sickle Cell Program. He is a board member of FSCDR and has participated/co-authored manuscripts in landmark SCD trials including the first multicenter trial showing hydroxyurea efficacy. He co-authored multiple SCD research publications in the Journal of Sickle Cell Disease.
- Augusta UniversitycoreDr. Betty S. Pace, MD serves as Professor of Pediatrics and Francis J. Tedesco Distinguished Chair of Pediatric Hematology/Oncology at Augusta University, where she directs the Pediatric Comprehensive Sickle Cell Program serving over 700 children. She is a founding board member of FSCDR and leads an NIH-funded basic/translational research laboratory on globin gene regulation.
Scale indicators8 records
Recent moves9 records
Expansion highlights6 records
The Foundation for Sickle Cell Disease Research competitors and assessment
Company assessmentRegional players
- Sickle Cell Foundation of Georgia: State-level SCD nonprofit serving Georgia. Comparable to FSCDR as a regional SCD-focused nonprofit organization providing patient services, advocacy, and education in a high-prevalence geography.
Direct peers
- Augusta University Pediatric Comprehensive Sickle Cell Program: Pediatric SCD program directed by Dr. Betty Pace serving over 700 children. Directly comparable to FSCDR's clinical care delivery model, research activities, and clinical trial site operations.
- Sickle Cell Disease Association of America (SCDAA): National advocacy organization for sickle cell disease. Comparable to FSCDR as a national SCD-focused nonprofit mission organization, though focused on advocacy versus clinical care delivery.
- VCU Adult Sickle Cell Program: Academic adult SCD specialty program directed by Dr. Wally Smith. Comparable to FSCDR for its focus on adult SCD care delivery, clinical trials, and research publication output.
- Howard University Center for Sickle Cell Disease: HBCU-affiliated SCD research and clinical center. Comparable to FSCDR for its mission focus on the African American SCD community and combined clinical-research-education model.
- Children's Healthcare of Atlanta Sickle Cell Disease Program: Major pediatric SCD program serving a high-prevalence population in Georgia. Directly comparable to FSCDR as a regional specialty SCD care network serving children and young adults.
- Cincinnati Children's Hospital - Sickle Cell Program: Major academic medical center with a comprehensive pediatric and adult sickle cell disease program. Directly comparable to FSCDR's specialty SCD care model, research output, and clinical trial site operations.
- Duke University Sickle Cell Program: Academic hematology program focused on adult SCD outcomes research and clinical trials. Comparable to FSCDR for SCD specialty clinical care, clinical trial site operations, and research publication.
Others
- Emmaus Life Sciences: Commercial pharmaceutical company focused on sickle cell disease treatments (Endari/L-glutamine). Comparable to FSCDR as an SCD-focused organization, though operating commercially versus nonprofit; represents a potential pharma partner rather than direct competitor.
- Vertex Pharmaceuticals / CRISPR Therapeutics (Casgevy): Developer of Casgevy, the first FDA-approved gene therapy for sickle cell disease. Comparable to FSCDR through the SCD treatment ecosystem; FSCDR is a clinical trial site partner rather than competitor, but represents the commercial frontier of SCD therapeutics that may shape future demand.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat6 records
Key risks6 records
Key highlights7 records
Customer concentration
The Foundation for Sickle Cell Disease Research social profiles
Digital presenceThe Foundation for Sickle Cell Disease Research financial estimates
Financial estimateRevenue estimate
Valuation estimate
The Foundation for Sickle Cell Disease Research leadership team
Management profileNumber of profiles
Profiles9 records
The Foundation for Sickle Cell Disease Research subsidiaries and ownership
Company hierarchySubsidiaries1 record
The Foundation for Sickle Cell Disease Research funding detail
Funding detailFunding overview
Funding rounds
Investors
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The Foundation for Sickle Cell Disease Research M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about The Foundation for Sickle Cell Disease Research
What does The Foundation for Sickle Cell Disease Research do?
FSCDR delivers specialized outpatient sickle cell disease care across a network of 15 Sickle Cell Disease Centers of Excellence in Florida, providing infusion therapy, pain management, telemedicine, and wraparound services. It runs an active clinical trials program serving as a trial site for investigational SCD therapies, and underwrites its mission through a national Sickle Cell Disease Registry with over 2,600 participants, the peer-reviewed Journal of Sickle Cell Disease (published with Oxford University Press), and workforce education programs for clinicians.
Is The Foundation for Sickle Cell Disease Research a public or private company?
The Foundation for Sickle Cell Disease Research is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was The Foundation for Sickle Cell Disease Research founded?
The Foundation for Sickle Cell Disease Research was founded in 2012. It employs 1 to 10 people.
Where is The Foundation for Sickle Cell Disease Research based?
The Foundation for Sickle Cell Disease Research is headquartered in Hollywood, United States, in the North America region.
How does The Foundation for Sickle Cell Disease Research make money?
Three revenue lines are on record. Donations and Charitable Contributions are the primary driver. The others are clinical Services Revenue and clinical Trial Partnerships.
Who are The Foundation for Sickle Cell Disease Research's main competitors?
Sickle Cell Foundation of Georgia is listed as a regional player. Direct peers are Augusta University Pediatric Comprehensive Sickle Cell Program, Sickle Cell Disease Association of America (SCDAA), VCU Adult Sickle Cell Program, Howard University Center for Sickle Cell Disease, Children's Healthcare of Atlanta Sickle Cell Disease Program, Cincinnati Children's Hospital - Sickle Cell Program and Duke University Sickle Cell Program. Others are Emmaus Life Sciences and Vertex Pharmaceuticals / CRISPR Therapeutics (Casgevy).
Does The Foundation for Sickle Cell Disease Research have an API?
No public API is recorded for The Foundation for Sickle Cell Disease Research.
What industry is The Foundation for Sickle Cell Disease Research in?
The Foundation for Sickle Cell Disease Research's product category is Specialty Hematology Healthcare Services. Its primary akta.pro industry code is HLAFADAJ, Virtual Urgent Care & On-Demand Teletriage Services. Its NAICS code is 621111 and its SIC code is 8011.