Sickle Cell Foundation

What Sickle Cell Foundation does

Sickle Cell Foundation, Inc. is a 501(c)(3) nonprofit community health organization headquartered at 1336 Vickers Road in Tallahassee, Florida, serving individuals and families affected by sickle cell disease in Leon County and surrounding areas. The foundation operates a direct-service delivery model rather than a technology platform, providing free sickle cell trait screenings via finger-stick blood tests with results in under five minutes, client advocacy interviews, genetic and family planning counseling, peer support through the Defier's Club, transportation coordination to medical appointments, prescription medication assistance, and limited financial aid for utilities, rent, food, and children's clothing. It also runs an annual summer camp program for children with sickle cell anemia and conducts community education and health fair presentations across the region.

The foundation's revenue model is donations-based, supported by individual contributions, corporate and community sponsorships, and recurring fundraising events including annual 5K runs/walks, bowling fundraisers, and a yearly conference. Distribution is regional and largely in-person, augmented by a digital footprint comprising the sicklecellfoundation.org website, Facebook, YouTube, Instagram, an email newsletter, and a recurring Zoom webinar series covering treatment access, mental health, and pharmaceutical education (including sessions featuring Emmaus Life Sciences/Endari). Strategic partners include OneBlood, Florida State University, and a roster of pharmaceutical and gene therapy companies (Pfizer, Novo Nordisk, Bluebird Bio, Emmaus Life Sciences), alongside local Greek-letter organizations, civic groups, and professional services firms. The organization is governed by a board of directors, with Dr. Mildred D. Fennal — inducted into the American Academy of Nursing in 2025 — serving as a board member.

Name

Sickle Cell Foundation

Legal name

Sickle Cell Foundation, Inc.

Website

https://sicklecellfoundation.org

Company type

Private

Operating status

Operating

Headcount range

11–50 employees

Short description

Sickle Cell Foundation is an organization that empowers the well-being of individuals with sickle cell anemia.

Ownership category

akta.pro rank

Product category

Community Health Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241)

SIC

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

akta.pro industry

PRIMARYBPAGACAM

Rare Disease & Special Needs Support Organizations

Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits

Keywords

• Sickle cell screening
• Patient advocacy services
• Genetic counseling
• Community health education
• Peer support groups

Headquarters

HQ city

Tallahassee

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, Others

Revenue model

1. Donations and Fundraising: The foundation relies on donations from individuals, corporations, and community members. They conduct fundraising events including 5K runs/walks, bowling fundraisers, and other community events to support their operations and services.

Pricing tiers

Distribution channels3 records

Marketing channels8 records

Core offering

The Sickle Cell Foundation provides free direct services to individuals and families affected by sickle cell disease, including sickle cell trait screenings via finger-stick blood tests with results in under five minutes, client advocacy interviews, peer support groups (Defier's Club), genetic counseling, prescription medication assistance, transportation coordination, financial assistance with utilities, rent, food, and children's clothing, and summer camp opportunities for children with sickle cell anemia. All services are delivered at no cost and are supplemented by community education presentations and health fair outreach across Leon County and surrounding areas.

Product overview

The Sickle Cell Foundation of Leon County, Florida is a non-profit community service organization providing a comprehensive range of services to individuals and families affected by sickle cell disease. The foundation operates a service delivery model rather than a technology platform, offering direct client services including advocacy, education, support groups, screenings, medication assistance, transportation, financial aid, counseling, and summer camps for children. These services are provided directly to the community and do not constitute a software product or technology platform.

Differentiator

Problem solved

Functional benefit

Products and services

• Client Advocacy Personal interview services providing support and guidance to clients affected by sickle cell disease.
• Sickle Cell Screening Free sickle cell trait screenings using finger-stick blood tests with results available in under five minutes, targeting people of childbearing age and the broader community.
• Defier's Club Support Group Peer support group for clients to explore feelings and personal problems related to sickle cell disease, meeting the fourth Friday of each month at noon.
• Counseling Services Free sickle cell screenings and counseling provided at convenient times and locations for interested persons.
• Prescription Medication Assistance Financial assistance with prescription medications for sickle cell-related illnesses for clients who cannot afford them.
• Transportation Services Transportation assistance for sickle cell-related doctor and emergency room visits via independent contractor drivers and gas vouchers.
• Financial Assistance Limited financial assistance with utilities, gas, rent, food, gas mileage, and children's clothing for eligible clients.
• Summer Camps Annual program providing children with sickle cell anemia the opportunity to attend summer camp, with fees and transportation costs covered.
• Health Fair Presentations On-site presentations at health fairs providing sickle cell education and screenings to community members and partner organizations.
• Public Education Community outreach and awareness programs that educate the public about sickle cell anemia, its inheritance, and the difference between sickle cell trait and sickle cell anemia.
• Employment Assistance Employment opportunities posted when available with the Sickle Cell Foundation for clients.
• Sickle Cell Community Education Project Community education initiative presented at the Westchester Sickle Cell Outreach Symposium to spread awareness about sickle cell disease.

Named customers3 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

15 partnerships are on record, tiered core and minor.

• OneBloodcoreStrategic or Co-development PartnerPartnership with OneBlood for blood donation drives. The partnership aims to collect blood donations to honor Devaughn Darling's jersey number 53. The collaboration includes community blood drives and events.
• Florida State University (FSU)coreStrategic or Co-development PartnerFSU hosts the annual commemoration event for Devaughn Darling, partnering with OneBlood and Sickle Cell Foundation for community blood drives and awareness events.
• Novo NordiskminorGTM or Marketing PartnerPharmaceutical company partner supporting sickle cell awareness and services.
• PfizerminorGTM or Marketing PartnerPharmaceutical company partner supporting sickle cell disease initiatives through Sickle Cell Speaks survey.
• Bluebird BiominorGTM or Marketing PartnerGene therapy company partner for sickle cell disease treatment awareness.
• Emmaus Life SciencesminorGTM or Marketing PartnerMaker of Endari treatment, partnered for educational events and awareness.
• 100 Black Men of Tallahassee AreaminorStrategic or Co-development PartnerCommunity organization partner for 5K events and awareness activities.
• Delta Sigma Theta (Tallahassee Alumna Chapter)minorStrategic or Co-development PartnerSorority partnership for community events and fundraising.
• Phi Beta Sigma (Chi Phi Chapter)minorStrategic or Co-development PartnerFraternity partnership for 5K events and community outreach.
• Alpha Kappa AlphaminorStrategic or Co-development PartnerSorority partnership for community events and awareness.
• Chi Eta Phi SororityminorStrategic or Co-development PartnerNursing sorority partnership for Sickle Cell Community Education Project.
• Lamar AdvertisingminorGTM or Marketing PartnerBillboards and outdoor advertising for 5K events and awareness campaigns.
• First Commerce CUminorGTM or Marketing PartnerCredit union partner supporting foundation events.
• SmartBankminorGTM or Marketing PartnerBanking partner for foundation support.
• KPMGminorGTM or Marketing PartnerProfessional services firm partnership for Tallahassee location.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Sickle Cell Disease Association of America: National umbrella organization serving individuals and families affected by sickle cell disease through education, advocacy, and member chapter support. Directly comparable to the Sickle Cell Foundation in mission (community-based education, screening, and support) and target population (sickle cell patients and carriers).
• Sickle Cell Disease Foundation: California-based community sickle cell organization providing education, counseling, screening, and patient support services. Directly comparable in service model (screening, counseling, advocacy) and beneficiary population, with a larger geographic footprint that the Sickle Cell Foundation could aspire to replicate.
• American Sickle Cell Anemia Association: Northeast Ohio-based sickle cell nonprofit providing screening, education, support groups, and patient services. Operates a near-identical service mix to the Sickle Cell Foundation, with the same community-based, donor-supported model serving sickle cell patients and trait carriers.
• Sickle Cell Foundation of Georgia: Statewide sickle cell organization providing education, screening, counseling, and patient support across Georgia. Directly comparable in mission and services; serves as a model of how the Sickle Cell Foundation could expand into statewide reach from its current regional scope.
• Martin Center Sickle Cell Initiative: Indianapolis-based sickle cell organization offering education, screening, case management, and emergency assistance. Operates a wraparound service model that closely mirrors the Sickle Cell Foundation's bundle of screening plus financial and medication assistance plus advocacy.
• Sickle Cell Coalition: Coalition of sickle cell-focused organizations, clinicians, and patient advocates working to amplify the sickle cell community's policy and research voice. Comparable as a peer organization representing collective sickle cell interests, complementing the foundation's grassroots focus.

Emerging players

• Sick Cells: Patient advocacy organization focused on elevating the voices of sickle cell patients through storytelling, policy advocacy, and awareness campaigns. Comparable in focus on sickle cell awareness and patient advocacy, with a more digital-first and media-driven execution that represents how patient engagement is evolving.

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest U.S. rare disease umbrella organization representing approximately 300 patient communities including sickle cell disease. Provides policy advocacy, research funding, and patient assistance programs across many rare diseases, making it the broad incumbent whose scope encompasses the foundation's niche.

Regional players

• Cayenne Wellness Center: California-based sickle cell nonprofit focused on education, advocacy, and life quality improvements for patients and families. Directly comparable in mission, though serving a different geography; represents how regional sickle cell foundations scale campaigns and partnerships in their territories.

Others

• Be The Match: National Marrow Donor Program operated by NMDP, managing the largest bone marrow registry in the world - critical for sickle cell patients needing matched stem cell donors. Ecosystem peer given overlap in serving sickle cell patients who need curative transplants, with overlapping blood donation partnerships via OneBlood.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat3 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/sicklecellaware
• YouTubeyoutube.com/@sicklecellfoundation
• Facebookfacebook.com/sicklecellfoundationinc
• Instagraminstagram.com/sicklecellleon
• LinkedInlinkedin.com/company/sickle-cell-foundation-inc

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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

Frequently asked questions about Sickle Cell Foundation