Sickle Cell Disease Foundation

What Sickle Cell Disease Foundation does

The Sickle Cell Disease Foundation (SCDF) is a 501(c)-equivalent non-profit social services organization founded in 1957 and headquartered in Ontario, California. It is the first and oldest community-based sickle cell disease (SCD) organization in the United States and serves individuals with SCD and their families across the full lifecycle — from newborn screening follow-up and parent education (BabySteps, ages 0-6), through pediatric summer camps (Camp Crescent Moon, founded 1967), teen transition programs (SC Crew, Camp Gibbous, ages 15-20), adult specialty clinical care via the 12-clinic Networking California for Sickle Cell Care (NCSCC) network, psychosocial counseling, and peer support groups. SCDF also delivers the California Sickle Cell Counselor Training & Certification Program (SCCTCP) — the only California-approved certification pathway for SCD educators and counselors — plus paid SCD 101 and Project ECHO telementoring for healthcare providers.

SCDF's technology footprint is intentionally lean: a Wix-based website, PayPal donation processing, JotForm intake/RSVP forms, and a third-party SMS provider, all overlaid on HIPAA-compliant handling of protected health information. Its most distinctive technical initiative is You Are A Marvel (YAAM), launched in 2019 with the Center for Inherited Blood Disorders and The Hills Tandem, which collects longitudinal patient-generated health data (biometric, environmental, symptom) from 65+ adults to develop personalized predictive algorithms for SCD pain crises.

Revenue is diversified across five streams: individual donations (general, program-specific, memorial/honor, emergency fund) via PayPal; state government grants — most notably a $14.4M California Budget Act 2019 award jointly with CIBD and a one-time $5M 2024 CDPH appropriation; federal HRSA/HHS grants ($184,000); corporate event sponsorships (walk-a-thon, golf tournament, awareness month); and paid professional training (SCCTCP Module I at $50 CA residents / $125 non-CA, SCD 101 at $1,000 invitation-only). Go-to-market is community-led and event-driven, with grassroots outreach, the American Red Cross Kindest Red Blood Drive, and grassroots policy advocacy via lobbyist London & Gonzalez Advocacy.

Name

Sickle Cell Disease Foundation

Legal name

SICKLE CELL DISEASE FOUNDATION

Website

https://scdfc.org

Company type

Private

Founded year

1957

Operating status

Operating

Short description

The Sickle Cell Disease Foundation is a 1957-founded California non-profit delivering education, counseling, clinical navigation, and a statewide 12-clinic adult specialty care network (NCSCC) for individuals with sickle cell disease and their families.

Ownership category

akta.pro rank

Product category

Sickle Cell Disease Patient Services and Advocacy

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190), Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990)

SIC

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

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Non-Communicable Diseases (NCDs) & Mental Health Programs (BPADAIAK), Rare Disease & Special Needs Support Organizations (BPAGACAM), Family & Community Support Services (Case Management, Referrals) (EDAJAIAK)

Keywords

• Sickle cell support
• Disease community programs
• Nonprofit health services
• Hemoglobin trait counseling
• Patient advocacy services

Headquarters

HQ city

Ontario

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: One-time and ongoing individual giving via PayPal donation links for general support, specific programs, event sponsorships, in-memory/in-honor gifts, and Client Services Emergency Fund.
2. Government Grants: Federal grant funding including Health Resources and Services Administration (HRSA) award of $184,000 with 0% financed with non-governmental sources, and California state funding ($14.4 million in 2019 via Budget Act of 2019, plus $5M one-time appropriation to CA Department of Public Health for Sickle Cell Centers of Excellence).
3. Event Sponsorships: Corporate sponsorship of events (walks, golf tournaments, camp, awareness month activities), coordinated by Patrice Ragin ([email protected]).
4. Training Program Fees: Paid enrollment in the Sickle Cell Counselor Training & Certification Program and SCD 101 course. Module 1 priced $50 for California residents and $125 for non-California residents; SCD 101 (by invitation) priced at $1,000 plus $25 service fee.
5. Corporate Sponsorships: Current and past corporate sponsors displayed on the sponsorship page provide ongoing financial support through direct contributions.

Pricing tiers

Go-to-market motion3 records

Distribution channels6 records

Marketing channels10 records

Core offering

The Sickle Cell Disease Foundation (SCDF) is a non-profit social service organization that provides education, counseling, clinical navigation, and direct support programs for individuals and families affected by sickle cell disease (SCD). Its core offerings include newborn screening hemoglobin trait follow-up, parent education, pediatric and teen summer camps, adult support groups, psychosocial counseling, a statewide network of 12 adult specialty clinics (NCSCC), a state-approved counselor training and certification program, and the You Are A Marvel (YAAM) personalized-medicine initiative.

Product overview

The Sickle Cell Disease Foundation (SCDF) is a non-profit foundation offering a portfolio of integrated programs and services — rather than a single unified software product — designed to support individuals with sickle cell disease (SCD) and their families. The portfolio spans clinical, educational, community, advocacy, and innovation offerings: the BabySteps Parent Education Program for ages 0-6, Camp Crescent Moon (ages 7-15) and Camp Gibbous (ages 15-20) for children and teens, the SC Crew transition program for ages 15-20, the Newborn Screening Hemoglobin Trait Follow-Up Program for parents of infants identified with hemoglobin traits, the Adult and Caregiver Support Group for peer support, Psychosocial Support/Counseling Services for direct counseling, and the Networking California for Sickle Cell Care (NCSCC) Initiative which operates 12 Adult SCD Clinics across California. SCDF also operates the You Are A Marvel (YAAM) innovation initiative for personalized patient-centered care, the California Sickle Cell Counselor Training & Certification Program (SCCTCP) including the SCD 101 introductory course and PSCRC Project ECHO telementoring for healthcare providers, and community programs such as the Holiday Giving Program, Client Services Emergency Fund, and SCDF Volunteer Program. These programs are coordinated together to advance SCDF's mission of building a world where individuals with SCD get the care and compassion they deserve.

Differentiator

Problem solved

Functional benefit

Brands

• Camp Crescent Moon: The nation's first and oldest summer camp for children with sickle cell disease, serving ages 7-15, with activities including maker spaces, archery, high-energy line dances, and overnight camp experiences since 1967.
• Camp Gibbous
• BabySteps Parent Education Program
• SC Crew
• You Are A Marvel (YAAM)
• Networking California for Sickle Cell Care (NCSCC)

Products and services

• BabySteps Parent Education Program Education and support program for parents of children with sickle cell disease (ages 0-6), covering healthcare navigation, SCD education, mental health services, and community health worker support.
• Camp Crescent Moon The nation's first and oldest summer camp for children with sickle cell disease (ages 7-14), featuring maker spaces, archery, high-energy line dances, and overnight camp experiences. Located at Temescal Gateway Park, Pacific Palisades, CA; camp runs July 19-25, 2026.
• Camp Gibbous Annual summer camp for teens and young adults with sickle cell disease (ages 15-20), featuring archery, zipline, ropes course, and similar activities.
• SC Crew Supportive community for teenagers and young adults with sickle cell disease (ages 15-20) in Southern California offering educational workshops, mentorship, college/career workshops, mock clinics, and fun outings.
• Newborn Screening Hemoglobin Trait Follow-Up Program In partnership with the California Department of Public Health, provides free hemoglobin trait counseling and family testing to parents of infants identified with sickle cell trait, hemoglobin C trait, and hemoglobin D trait through California's Newborn Screening Program.
• Adult and Caregiver Support Group Virtual peer support group for adults living with sickle cell disease and their caregivers, held on the third Friday of every month at 6:30 pm.
• Adult SCD Specialty Clinics (NCSCC Network) Network of 12 specialty clinics across California providing comprehensive care to adults with sickle cell disease, including primary care, hematology, community health worker support, social workers, alternative pain management (pain specialists, yoga, acupuncture), and coordinated emergency/inpatient care.
• Psychosocial Support / Counseling Services Free counseling services for individuals and families affected by sickle cell disease, provided by experts who understand how SCD affects individuals and families.
• You Are A Marvel (YAAM) Initiative Patient-centered care and personalized medicine initiative collecting longitudinal patient-generated health data (PGHD) from adults with SCD (biometric, environmental, symptom data) to develop personalized algorithms predicting SCD pain crises. Partnership between SCDF, Center for Inherited Blood Disorders, and The Hills Tandem.
• California Sickle Cell Counselor Training & Certification Program (SCCTCP) State-approved sickle cell counseling program for healthcare professionals, paraprofessionals, community health workers, and educators consisting of Module I (introductory online), Module II A (advanced), Educator Training, Module II B (counselor), Module III (internship), and Module IV (continuing education).
• SCD 101 (By Invitation Only) By-invitation-only online self-paced course covering Units 2-4 of the SCCTCP curriculum: Basic Genetics, Basic Hematology, and Living with Sickle Cell Disease. General Admission priced at $1,000 plus $25 service fee.
• PSCRC Project ECHO Telementoring Monthly one-hour telementoring video conference series for clinical providers, including case presentation, didactic, and review, designed to bridge the gap between local providers and pediatric/adult SCD specialists. Delivered in partnership with the Pacific Sickle Cell Regional Collaborative.
• Lunch & Learn SCD Educational Sessions Peer-to-peer educational sessions led by sickle cell disease specialists, including physicians, nurses, and allied health professionals, providing continuing education on SCD topics.
• SCDF Volunteer Program Program focused on the donation of time and talent, providing development and administration of volunteers across all of the foundation's programs and services. Hundreds of volunteers contribute annually to support Camp Crescent Moon, Walk-a-thon, Golf Tournament, and Holiday Giving Program.
• Client Services Emergency Fund Financial assistance program that supports sickle cell disease patients and their families in financial need.
• Holiday Giving Program Program providing holiday assistance (toy/gift collection, gift wrapping, and distribution) to families affected by sickle cell disease. Statewide opportunities available.
• In Memory / In Honor Of Tribute Giving Donation program that allows donors to give gifts in memory of or in honor of a loved one or a friend.

Quantifiable outcome

• 20% reduction in preventable hospitalizations of adults with SCD; 50% reduction in hospital length-of-stay (NCSCC)
• +5 more outcomes

Named customers12 records

Segments6 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

AI capability1 record

Feature3 records

Partnerships

15 partnerships are on record, tiered flagship and core.

• Senator Cory Booker (D-NJ)flagshipOthers · 14 October 2025Introduced Senate Bill 721: The Sickle Cell Disease Comprehensive Care Act, which would allow State Medicaid programs to provide comprehensive and coordinated care to individuals with SCD through a home health model. SCDF publicly endorsed the legislation on October 14, 2025 with statement by President & CEO Mary Brown.
• Governor Gavin Newsom (California)flagshipOthers · 27 June 2019Signed the Budget Act of 2019 (AB 74, Chapter 23) on June 27, 2019, approving SCD funding that granted $14.4M to CIBD and SCDF for SCD services expansion plus $600,000 to Tracking California for the Sickle Cell Data Collection Program.
• California Assembly Member Mike Gipson (D-64th District, South Los Angeles)flagshipOthers · 21 February 2019Introduced AB-1105 into the California legislature on February 21, 2019, directing $15 million over three years for new SCD services including statewide network of adult SC clinics, workforce expansion, surveillance, and awareness. The bill was signed by Governor Newsom on June 27, 2019.
• Center for Inherited Blood Disorders (CIBD)flagshipStrategic or Co-development Partner · 1 January 2017Co-lead partner for the Networking California for Sickle Cell Care (NCSCC) initiative since 2017, jointly responsible for advancing aggressive policy agenda for the SCD community in California. Co-recipient of $14.4M California Budget Act 2019 grant and $5M one-time CA DPH appropriation. Also co-lead of the YAAM (You Are A Marvel) initiative. Founder and President: Dr. Diane Nugent.
• London & Gonzalez Advocacy (Tony Gonzalez)flagshipOthers · 1 January 2017California lobbyist Tony Gonzalez of the firm London & Gonzalez Advocacy was retained by SCDF in 2017 to advance SCD policy in California. Initially offered pro bono services during SCDF's 60th anniversary; subsequently led effort to cultivate new financial resources that resulted in the $15M legislative package (AB-1105, signed into law June 27, 2019).
• The Hills TandemcoreStrategic or Co-development PartnerCo-lead partner for the You Are A Marvel (YAAM) initiative alongside SCDF and Center for Inherited Blood Disorders. Founded by Jennifer Fields, who also serves as Implementation Strategy Consultant for SCDF. The Hills Tandem worked with SCDF and CIBD to create the Networking California for Sickle Cell Care (NCSCC) program establishing 12 clinics statewide.
• American Red Cross Blood ServicescoreGTM or Marketing PartnerPartner for the 'Kindest Red Blood Drive for Sickle Cell Disease' event held annually during Sickle Cell Disease Awareness Month (September). Addresses the urgent need for blood donations that match the unique needs of sickle cell warriors. Drive typically held September 14 with exclusive Red Cross raglan shirt incentive.
• Azusa Pacific UniversitycoreGTM or Marketing PartnerCo-host partner for the 'End of Summer Jam, Sickle Cell Walk, and Reunion' community event held Saturday, September 21 during Sickle Cell Disease Awareness Month. Brings together sickle cell warriors, families, and supporters.
• Pacific Sickle Cell Regional Collaborative (PSCRC)coreStrategic or Co-development PartnerPartner for Project ECHO (Extension for Community Healthcare Outcomes) telementoring series — a monthly one-hour video conference for clinical providers including case presentation, didactic, and review, designed to bridge the gap between local providers and pediatric/adult SCD specialists. 2026 telementoring calendar is hosted via PSCRC infrastructure.
• California Department of Public Health (CDPH)flagshipStrategic or Co-development PartnerState government partner for the Hemoglobin Trait Follow-Up Program (provides FREE trait counseling and family testing for parents of infants identified with sickle cell trait). Also co-developed the Parent and Caregiver Handbook for Sickle Cell Disease with SCDF and UCSF Benioff Oakland. SCDF is a certified sickle cell trait counseling center in partnership with CDPH Division of Genetic Disease Screening-Newborn Screening Program.
• UCSF Benioff Children's Hospital OaklandcoreStrategic or Co-development PartnerPartner in co-developing the California Department of Public Health Parent and Caregiver Handbook for Sickle Cell Disease (English and Spanish, Revised 2024). Dr. Marsha Treadwell is a leader at UCSF Benioff Oakland quoted in SCDF communications. Also operates an NCSCC adult SCD clinic (partnership established 2020).
• Tracking CaliforniacoreImplementation/ SI/ Consulting PartnerRecipient of $600,000 from the California 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.
• PayPal (PayPal Giving Fund / Donate Buttons)coreTechnology or IntegrationProvides hosted donation button infrastructure enabling SCDF to accept general donations and program-specific donations (Client Services Emergency Fund, Camp Crescent Moon, Camp Gibbous, SC Crew Transition Program, Holiday Giving Program, In Memory/In Honor).
• Third-party SMS Service ProvidercoreTechnology or IntegrationProvides SMS messaging platform used by SCDF for mobile communications with constituents. SMS Privacy Policy and SMS Terms of Service published. Coverage across major (AT&T, Verizon, Sprint, T-Mobile, etc.) and minor carriers. Recurring messaging with STOP/HELP opt-out commands.
• JotFormcoreTechnology or IntegrationProvides online form infrastructure for SCDF event RSVPs, camp volunteer applications, walk-a-thon and golf tournament sign-ups, support group registrations, and HIPAA-compliant patient intake forms.

Scale indicators14 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella organization for the ~7,000 rare diseases in the U.S., including SCD. Comparable in that it advocates for policy, research funding, and patient services, but serves as an umbrella rather than a direct SCD service provider.
• Cystic Fibrosis Foundation: Large, well-capitalized rare-disease nonprofit funding research, care centers, and advocacy for cystic fibrosis. Structurally analogous to SCDF (disease-specific nonprofit, certified care-center network, heavy pharma partnership model) but at vastly greater scale and with a much larger donor base.

Direct peers

• Sickle Cell Disease Association of America (SCDAA): The national umbrella SCD advocacy and community-services organization. Direct peer: both organizations serve the same SCD patient population with overlapping programs (education, counseling, advocacy, member-clinic networks) and compete for the same federal and donor funding pools.
• Center for Inherited Blood Disorders (CIBD): California-based nonprofit operating adult SCD clinics and co-leading NCSCC with SCDF. Closely aligned mission and patient population; functions both as a co-grantee and operational peer in delivering specialty SCD care.
• American Sickle Cell Anemia Association (ASCAA): Long-standing SCD community-based organization (Cleveland-based) providing patient education, support groups, and counseling. Directly comparable to SCDF as a disease-specific nonprofit offering cradle-to-grave programs and community health worker support for the SCD population.

Emerging players

• Cayenne Wellness Center: California-based SCD nonprofit focused on adult transition, mental health, and community education. Overlaps with SCDF's SC Crew transition program and adult support groups, and competes for the same Southern California patient base and donors.
• Sick Cells: National SCD advocacy organization led by patients and focused on policy, storytelling, and federal legislation. Comparable to SCDF's advocacy work (e.g., supporting S.721) but with a federal rather than state-level lens and a digital-first operating model.
• Pacific Sickle Cell Regional Collaborative (PSCRC): Regional HRSA-funded collaborative providing telementoring (Project ECHO) and clinical workforce development for SCD across the Western U.S. Comparable in workforce-development and clinical-training focus (SCCTCP), and an active distribution partner for SCDF's training programs.

Regional players

• Sickle Cell Foundation of Georgia: Georgia-based SCD nonprofit offering education, counseling, and patient support. Comparable operating model to SCDF but serves a different (Southeastern U.S.) geography with high SCD prevalence, illustrating the regional peer pattern.
• Sickle Cell Disease Association of Illinois: Statewide Illinois SCD nonprofit providing community education, patient services, and advocacy. Directly comparable mission and program set to SCDF but operating in a different state without SCDF's certified counselor-training monopoly.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xtwitter.com/SCDFoundation
• YouTubeyoutube.com/@SCDFoundation
• Facebookfacebook.com/SCDFoundation
• Instagraminstagram.com/scdfoundation

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Subsidiaries2 records

Funding overview

Funding rounds

Investors

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

M&A

Investments

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Frequently asked questions about Sickle Cell Disease Foundation