SICKLE CELL DISEASE FOUNDATION OF CALIFORNIA

What SICKLE CELL DISEASE FOUNDATION OF CALIFORNIA does

The Sickle Cell Disease Foundation of California (SCDF) is a 501(c)-style nonprofit organization incorporated in 1957, making it the first and oldest sickle cell disease community-based organization in the United States. Headquartered in Ontario, California, SCDF delivers direct services to individuals with sickle cell disease (SCD) and their families through an integrated portfolio that includes early-intervention education (BabySteps for ages 0-6), summer camps (Camp Crescent Moon for ages 7-14 and Camp Gibbous for young adults), adult support groups, clinical trial information, hemoglobin trait counseling, mental health counseling, community health worker navigation, and a Sickle Cell Counselor Training & Certification Program. The organization also operates the Networking California for Sickle Cell Care (NCSCC) initiative, a statewide clinical network of 12 adult SCD centers and community organizations across California counties with the highest adult SCD prevalence, built in partnership with the Center for Inherited Blood Disorders (CIBD) on the back of a $14.4 million state appropriation under the 2019 Budget Act and a subsequent $5 million one-time 2024 appropriation for Sickle Cell Centers of Excellence.

SCDF's business model is a public-funder-and-donation-funded nonprofit model with no fee-for-service revenue. The organization generates income through three primary streams: individual and corporate donations collected via its website and events, government grants (notably a $184,000 HRSA award and the multi-million-dollar California state appropriations tied to NCSCC), and event sponsorships for walks, blood drives, and awareness activities. The organization holds a unique regulatory position in California as the sole entity approved to provide Hemoglobin-Trait Counseling Services and to direct the Sickle Cell Educator/Counselor Certification Training Course. Its go-to-market approach is community-led, relying on partnerships with academic institutions (UCSF Benioff, Azuza Pacific University), blood banks (American Red Cross), public health agencies (CDPH), and patient advocacy groups (The Hills Tandem, Tracking California) to extend service reach. SCDF reports serving approximately 3,500 SCD Warriors annually, with NCSCC reporting a 20% reduction in preventable hospitalizations and a 50% reduction in hospital stay length since inception, outcomes the organization uses to justify continued public funding.

Name

SICKLE CELL DISEASE FOUNDATION OF CALIFORNIA

Legal name

Sickle Cell Disease Foundation

Website

https://scdfc.org

Company type

Private

Founded year

1957

Operating status

Operating

Headcount range

1–10 employees

Short description

The Sickle Cell Disease Foundation of California is a 1957-founded nonprofit that delivers education, counseling, camps, and community health worker support to individuals with sickle cell disease and their families, and operates a statewide network of 12 adult SCD clinics through the NCSCC initiative.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy and Sickle Cell Disease Support Services

NAICS

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

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)

akta.pro primary industry

Home & Community-Based Services (HCBS) Coordination & Case Management (HSABAIAM)

Keywords

• Sickle cell support
• Patient advocacy services
• Community health programs
• Nonprofit health services
• Disease counseling programs

Headquarters

HQ city

Ontario

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, Infrastructure, Others

Revenue model

1. Donations and Contributions: SCDF generates revenue through individual donations, corporate donations, and general contributions via PayPal and other donation channels on their website. Donors can make general donations or donate to specific programs.
2. Government Grants: SCDF receives government funding including a $184,000 award from HRSA and previously received $14.4 million from California for the NCSCC initiative over three years.
3. Event Sponsorships: Corporate and individual sponsors support SCDF events including walks, blood drives, and awareness month activities.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels7 records

Core offering

The Sickle Cell Disease Foundation of California is a nonprofit that provides free education, counseling, summer camps, support groups, and care-navigation services for individuals and families affected by sickle cell disease, along with the Sickle Cell Counselor Training & Certification Program. It also operates the statewide Networking California for Sickle Cell Care (NCSCC) initiative, a clinical and community network of 12 adult sickle cell centers designed to improve specialty care access and reduce hospitalizations across California.

Product overview

The Sickle Cell Disease Foundation of California offers a comprehensive portfolio of programs and services for individuals with sickle cell disease and their families. The organization's offerings include educational programs (BabySteps for parents of children ages 0-6), recreational camps (Camp Crescent Moon for ages 7-14, Camp Gibbous for young adults), support groups, counseling services, and the NCSCC initiative which establishes a statewide network of 12 sickle cell care centers. Additional services include the Sickle Cell Counselor Training & Certification Program, community health worker support, hemoglobin trait counseling, clinical trial information, and the Sickle Cell Disease Awareness Month Toolkit. The foundation also operates SMS-based communication services for patient engagement.

Differentiator

Problem solved

Functional benefit

Brands

• NCSCC (Networking California for Sickle Cell Care): An initiative developed through advocacy and stakeholder engagement to uplifting Sickle Cell Disease as a statewide priority.
• Camp Crescent Moon
• Camp Gibbous
• BabySteps Parent Education Program
• SC CREW
• You Are A Marvel (YAAM)

Products and services

• BabySteps Parent Education Program Early intervention program for parents of children with sickle cell disease (ages 0-6), providing healthcare navigation, SCD education, mental health services, and community health worker support.
• Camp Crescent Moon Summer camp program for children with sickle cell disease ages 7-14, offering maker spaces, archery, high-energy line dances, and other activities in a medically supported environment.
• Camp Gibbous Camp program for young adults with sickle cell disease, providing recreational activities and peer support in a community setting.
• Adult Support/Network Groups Safe, supportive space for adults living with sickle cell disease to connect, share experiences, and support one another through conversations, resources, and community building.
• Sickle Cell Counselor Training & Certification Program Multi-module certification training course for sickle cell counselors and educators, including introductory online modules; offered under SCDF's status as the only California-approved director of the program.
• CHW Support Services Community Health Worker support services providing care coordination and healthcare navigation for individuals with sickle cell disease across California.
• Hemoglobin Trait Follow-Up Program Counseling and follow-up services for individuals with sickle cell trait on inheritance patterns, family planning, and health implications.
• Counseling Services Mental health and emotional support counseling services for individuals and families affected by sickle cell disease.
• Networking California for Sickle Cell Care (NCSCC) Statewide initiative delivering a network of 12 sickle cell disease centers and community organizations in California counties with the highest adult SCD prevalence, providing specialty care, surveillance, workforce expansion, and outreach.
• SC CREW Peer support and mentorship program for individuals with sickle cell disease.
• You Are A Marvel (YAAM) Empowerment-focused program for individuals with sickle cell disease.

Quantifiable outcome

• 3,500 SCD Warriors served annually
• +3 more outcomes

Named customers2 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

Seven partnerships are on record, tiered core and minor.

• Center for Inherited Blood Disorders (CIBD)coreStrategic or Co-development Partner · 27 June 2019CIBD and SCDF were jointly granted $14.4 million to expand access to SCD services over three years through the NCSCC initiative. CIBD partners with SCDF to advance an aggressive policy agenda for the SCD community in California, establish the statewide network of sickle cell disease centers, and support workforce expansion among clinicians and community health workers.
• Tracking CaliforniaminorStrategic or Co-development Partner · 27 June 2019Awarded $600,000 as part of the Budget Act of 2019 to expand the Sickle Cell Data Collection Program to better understand long-term trends in diagnosis, treatment, and healthcare access for people with SCD in California.
• American Red Cross Blood ServicescoreStrategic or Co-development PartnerPartnership for the Kindest Red Blood Drive for Sickle Cell Disease, addressing the urgent need for blood donations that match the unique needs of sickle cell warriors. Joint initiative during Sickle Cell Disease Awareness Month.
• Azuza Pacific UniversityminorStrategic or Co-development PartnerPartner for End of Summer Jam, Sickle Cell Walk, and Reunion event bringing together sickle cell warriors, families, and supporters.
• California Department of Public HealthcoreStrategic or Co-development PartnerCollaborated with CDPH and UCSF Benioff Children's Hospital Oakland to revise and update the Parent and Caregiver Handbook for Sickle Cell, covering every stage from birth to 18 years old. SCDF is the only organization in California approved to provide Hemoglobin-Trait Counseling Services.
• UCSF Benioff Children's Hospital OaklandcoreStrategic or Co-development PartnerPartnered with SCDF and California Department of Public Health to revise the comprehensive Parent and Caregiver Handbook for Sickle Cell disease.
• The Hills TandemminorStrategic or Co-development PartnerSCDF collaborated with The Hills Tandem to create Networking California for Sickle Cell Care (NCSCC), establishing 12 clinics across California to deliver comprehensive care to adults with sickle cell disease.

Scale indicators12 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Cayenne Wellness Center: California-based SCD community-based organization providing patient navigation, education, camps, and support programs for SCD warriors and families. Operates in the same California geography with overlapping mission and program mix.
• Sickle Cell Foundation of Georgia: Georgia-based SCD community-based nonprofit delivering education, counseling, and patient support. Direct functional peer in a different state, providing a useful comparison for SCDF's state-level CBO model.
• Sickle Cell Disease Association of Illinois: Illinois state-level SCD community-based organization providing education, advocacy, and support services. Direct functional peer operating under a similar state-CBO model in a different geography.
• American Sickle Cell Anemia Association: Pennsylvania-based SCD voluntary health organization offering education, patient services, and community support. A long-running state-level SCD CBO comparable in scope and program mix.
• Martin Center Sickle Cell Initiative: Indiana-based SCD community organization providing case management, education, and support services. Comparable as a state-level SCD CBO with similar mission and program design.

Broad incumbents

• Sickle Cell Disease Association of America: National umbrella SCD advocacy and member organization representing state and local SCD CBOs. Directly comparable as the largest SCD-focused voluntary health organization in the U.S., though operating at a national rather than state scope.

Emerging players

• Sickle Cell 101: SCD-focused education and awareness nonprofit producing digital content and resources for SCD warriors. Comparable in patient education focus but with a digital/emerging-player profile rather than SCDF's clinical network model.
• Sick Cells: National SCD advocacy nonprofit focused on policy, awareness, and patient storytelling. Comparable mission (improving SCD quality of life) but primarily advocacy-driven rather than direct service, making it a partial overlap.
• Children's Sickle Cell Foundation (Pittsburgh): Regional SCD nonprofit focused on children and families affected by SCD, offering support groups and educational programming. Comparable as a disease-specific CBO but smaller in scale and pediatric-only scope.

Others

• Center for Inherited Blood Disorders: California-based clinical partner of SCDF on the NCSCC initiative, jointly awarded $14.4M to expand SCD services. Comparable as a sibling organization delivering SCD clinical care in California rather than competing, but materially intertwined with SCDF's NCSCC strategy.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xtwitter.com/SCDFoundation
• YouTubeyoutube.com/@SCDFoundation
• Facebookfacebook.com/SCDFoundation
• Instagraminstagram.com/scdfoundation
• LinkedInlinkedin.com/company/sickle-cell-disease-foundation-of-california

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

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 DISEASE FOUNDATION OF CALIFORNIA