Sickle Cell Association

What Sickle Cell Association does

The Sickle Cell Association is a Missouri-based 501(c)-style nonprofit organization founded in November 2011 by Rosemary Britts, who established the organization after her daughter was born with sickle cell disease. Headquartered at 5615 Pershing, Ste 29 in St. Louis, the organization supports warriors (individuals living with SCD), caregivers, and families through wraparound services that address medical, emotional, financial, and social challenges — explicitly extending beyond the patient to include the full care network. Its core offering consists of five direct programs: Caregiver Support, Gene Therapy Awareness, Youth & Teen Support, Community Outreach, and Social Services, supplemented by an Education Hub covering Understanding SCD, Sickle Cell Trait, Pain Management, Gene Therapy 101, and Life After Cure, plus the 2025 Warriors Without Limits campaign and the annual Sickle Cell Stroll community event. Stated impact metrics include 1,400+ individuals reached through programs, 150+ actively supported clients, 678 services delivered in one year, and a 96% rate of clients securing a medical home.

The underlying technology is minimal and conventional: a website serving as the primary distribution channel for donations, program enrollment, educational content, and merchandise e-commerce (Pullover Hoodies at $25 and Zip-Up Hoodies at $30). Donations are processed through Stripe; communications are distributed via mainstream social media (Instagram, Facebook, X, LinkedIn) and email newsletters; and telehealth sessions are offered for patients unable to travel. There is no proprietary technology platform, mobile application, API, or AI capability disclosed.

The organization's business model is donation- and grant-driven rather than commercial. Revenue streams include voluntary individual donations (starting at $1, with tiered giving levels at $25, $50, $250, $500, and $1,000 mapping to specific outcomes such as telehealth sessions, care navigation, case management, and gene therapy family support), merchandise sales, and government grants. The most significant disclosed funding source is a $184,000 HRSA grant from the U.S. Department of Health and Human Services (HHS), 100% government-financed. Service delivery is enabled through formal partnerships with five leading healthcare institutions — SSM Health Children's Foundation, Washington University in St. Louis, St. Louis Children's Hospital, Barnes-Jewish Hospital, and Texas Medical Center — which provide clinical collaboration and patient referrals across Missouri and into Texas.

Name

Sickle Cell Association

Legal name

Sickle Cell Association

Website

https://sicklecellassociation.org

Company type

Private

Founded year

2011

Operating status

Operating

Headcount range

1–10 employees

Short description

The Sickle Cell Association is a Missouri-based nonprofit that provides wraparound support, plain-language education, and advocacy for warriors, caregivers, and families living with sickle cell disease, primarily across Missouri with partnership extensions into Texas.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Nonprofit Support Services

NAICS

Individual and Family Services (6241), Social Assistance (624), Health Care and Social Assistance (62)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Family & Pediatric Direct-to-Consumer Virtual Care (HLALAAAI)

Keywords

• Sickle cell support
• Patient advocacy services
• Caregiver support programs
• Community health education
• Gene therapy awareness

Headquarters

HQ city

St Louis

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D

Revenue model

1. Donations: Voluntary donations from individuals, corporate sponsors, and supporters. Donations are used to support SCA's mission and programs including caregiver support, gene therapy awareness, youth support, and community outreach.
2. Merchandise Sales: Sale of branded merchandise including hoodies ($25-$30) to raise awareness and generate revenue while supporters show their support.
3. Government Grants: Grant funding from government sources. The project is supported by HRSA of the U.S. Department of Health and Human Services as part of a grant totaling $184,000.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels6 records

Core offering

The Sickle Cell Association provides free wraparound support, plain-language education, and advocacy for individuals, caregivers, and families affected by sickle cell disease in Missouri. Its offerings comprise direct support programs (caregiver support, gene therapy awareness, youth and teen transition support, community outreach, social services), a structured Education Hub, awareness campaigns (Warriors Without Limits), annual community events, and small-ticket branded merchandise sold to fund the mission.

Product overview

The Sickle Cell Association is a Missouri-based nonprofit organization providing wraparound support, plain-language education, and advocacy for warriors, caregivers, and families living with sickle cell disease. The organization operates as a service-focused nonprofit rather than a technology product company. Its portfolio consists of direct support programs (Caregiver Support, Gene Therapy Awareness, Youth & Teen Support, Community Outreach, Social Services), an Education Hub containing disease management resources, the Warriors Without Limits campaign featuring real warrior stories, the annual Sickle Cell Stroll awareness event, and branded merchandise (hoodies). The organization connects families with healthcare institutions including SSM Health Children's Foundation, Washington University St. Louis, St. Louis Children's Hospital, Barnes-Jewish Hospital, and Texas Medical Center for service delivery.

Differentiator

Problem solved

Functional benefit

Brands

• Warriors Without Limits: Current campaign (2025) providing direct support, gene therapy awareness, and new hope for families living with sickle cell disease.

Products and services

• Caregiver Support Program Comprehensive support program for parents, family members, and other caregivers of sickle cell warriors, providing mental health resources, caregiver retreats, and crisis assistance.
• Gene Therapy Awareness Program Plain-language education and decision-support program about sickle cell disease, sickle cell trait, gene therapy options, and life after treatment, aimed at families considering or undergoing gene therapy.
• Youth & Teen Support Program Specialized support for young warriors progressing to adult care, including peer connections and self-advocacy training.
• Community Outreach Program Community engagement initiatives designed to raise awareness of sickle cell disease and connect families with resources across Missouri.
• Social Services Program Wraparound support services addressing social determinants of health for families living with sickle cell disease, including case management and care navigation.
• Education Hub Centralized educational resource center covering understanding sickle cell disease, sickle cell trait, living with sickle cell, pain management, gene therapy basics, and life after cure, delivered as plain-language articles and guides.
• Pullover Hoodie Classic pullover hoodie merchandise featuring 'Sickle Cell Warrior' branding, priced at $25.00, available in multiple colors and sizes to raise awareness and generate revenue.
• Hoodie with Zipper Zip-up hoodie merchandise featuring 'Sickle Cell Warrior' branding, priced at $30.00, available in multiple colors and sizes to raise awareness and generate revenue.

Quantifiable outcome

• 1,400+ individuals reached through programs and services
• +4 more outcomes

Named customers4 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration5 records

Partnerships

Five partnerships are on record, tiered core.

• SSM Health Children's FoundationcoreStrategic or Co-development PartnerHealthcare institution partner working with SCA to serve families across Missouri. Partnership enables referrals and coordinated care for sickle cell patients and families.
• Washington University in St. Louis (WashU)coreStrategic or Co-development PartnerLeading academic medical center partner supporting SCA's mission to serve Missouri families. Partnership provides clinical expertise and research collaboration opportunities.
• St. Louis Children's Hospital (SLCH)coreStrategic or Co-development PartnerPediatric healthcare partner working with SCA to support children and families affected by sickle cell disease. Partnership enables comprehensive care coordination.
• Barnes-Jewish HospitalcoreStrategic or Co-development PartnerMajor teaching hospital partner providing clinical care and support for sickle cell patients. Partnership facilitates access to specialized treatment and services.
• Texas Medical Center (TMC)coreStrategic or Co-development PartnerHealthcare institution partner expanding SCA's reach and network of care for sickle cell families across the region.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Regional players

• Sickle Cell Society: UK-based national charity providing support, advocacy, and information for people with sickle cell disease. Comparable mission and program model, but serves a different geography (UK) and operates under NHS-aligned context.
• Sickle Cell Foundation of Georgia: State-level SCD nonprofit providing case management, education, and support services in the Southeast U.S. Comparable program mix and target population, but operates in a different geography with its own donor and hospital network.

Broad incumbents

• EveryLife Foundation for Rare Diseases: National policy and advocacy nonprofit for the rare disease community. Comparable in advocacy and education, but focuses on federal policy and regulatory engagement rather than direct patient/family wraparound services.
• National Organization for Rare Disorders (NORD): Large national umbrella for ~7,000 rare diseases including sickle cell disease. Provides advocacy, education, and patient services at scale; comparable in advocacy and education but covers a much broader disease portfolio than a single-disease operator.
• March of Dimes: Large-scale maternal and infant health nonprofit with historical involvement in sickle cell trait and newborn screening. Compares on advocacy and maternal/child health education but operates as a broad incumbent, not a single-disease specialist.

Direct peers

• Children's Sickle Cell Foundation (CSCF): Pittsburgh-based nonprofit focused on children and families affected by sickle cell disease, providing direct support, education, and community programs. Highly comparable mission and family-focused wraparound service model.
• Cooley's Anemia Foundation: National nonprofit supporting patients with thalassemia, a related inherited blood disorder treated with similar therapies (gene therapy, bone marrow transplant). Comparable disease-specific patient-education, navigation, and family-support model.
• American Sickle Cell Anemia Association (ASCAA): Cleveland-based nonprofit providing patient support, education, and community-based services for individuals and families affected by sickle cell disease. Directly comparable community-led wraparound model and disease-specific focus.
• Sickle Cell Disease Association of America (SCDAA): National umbrella nonprofit for sickle cell advocacy, education, and member-chapter support. Directly comparable mission and service mix (education, advocacy, family support) but operates at national scale with established chapters and federal lobbying reach.

Others

• Ronald McDonald House Charities: Large nonprofit supporting families of children receiving medical treatment away from home. Comparable in family/caregiver wraparound support and healthcare system partnerships, but not disease-specific and serves a much broader patient population.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/sicklecellassoc
• Facebookfacebook.com/sicklecellassoc
• LinkedInlinkedin.com/company/sickle-cell-association
• Instagraminstagram.com/sicklecellassoc/?hl=en

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Sickle Cell Association