Sickle Cell Disease Association of America, Inc.

Name

Sickle Cell Disease Association of America, Inc.

Legal name

Sickle Cell Disease Association of America, Inc.

Website

https://sicklecelldisease.org

Company type

Private

Founded year

1972

Operating status

Operating

Headcount range

51–100 employees

Short description

SCDAA is a 501(c)(3) nonprofit founded in 1972 that serves as the national voice for sickle cell disease. It operates a network of 50+ community-based member organizations across 31 states, delivering CHW training, federal grant-funded programs, advocacy, and patient resources to the U.S. sickle cell community.

Ownership category

akta.pro rank

Product category

Non-profit Patient Advocacy & Sickle Cell Disease Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241), Business Associations (813910), Professional Organizations (81392)

SIC

Services-Membership Organizations (8600), Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

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

Keywords

• Sickle cell advocacy
• Community health worker training
• Patient advocacy services
• Rare disease education
• Nonprofit health organization

Headquarters

HQ city

Hanover

HQ country

Germany

HQ region

Europe

Offices3 records

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Federal Government Grants: SCDAA receives federal grant funding from HRSA's Sickle Cell Disease Treatment Demonstration Program, HRSA's Sickle Cell Disease Newborn Screening Follow-Up Program ($7 million), and CDC's Sickle Cell Data Collection Program ($6 million). These grants fund member organization programs, community health workers, and data collection activities.
2. Individual Donations and Membership: SCDAA generates revenue through individual donations via its online donation portal and membership fees from its 50+ member community-based organizations across 31 states.
3. CHW Training Program Fees: The CHW Training Program is offered at $1,060 per participant and CHW Supervisors Training at $350. Partial scholarships are available. Revenue supports training delivery, materials, and platform access.
4. Corporate Sponsorships: Corporate sponsors such as Pfizer Pharmaceuticals (Impact Sponsor for the 2026 Leadership Summit) provide sponsorship funding for SCDAA events and initiatives.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels7 records

Core offering

SCDAA is a national 501(c)(3) nonprofit that serves as the voice for sickle cell disease in the United States, providing advocacy, education, support services, and resource navigation to individuals and families affected by SCD through a national network of 50+ member community-based organizations across 31 states. The organization delivers an accredited National Community Health Worker Training Program via its own LMS, produces MARAC medical advisories, operates the SCD C.A.R.E.S. clinical-trial awareness consortium, runs a MedicAlert emergency-care pilot, and convenes annual events including the Leadership Summit, National Convention, and Advocacy Days.

Product overview

SCDAA is a non-profit organization serving as the national voice for sickle cell disease since 1972. The organization operates a portfolio of advocacy, education, and support programs rather than a unified technology product. Core offerings include the CHW Training Program (an accredited online learning management system for community health worker training), the SCD C.A.R.E.S. Consortium for clinical trial awareness, the Mental Health and Wellness Initiative, and the MedicAlert Pilot Program for emergency care. Additional programs include advocacy initiatives, annual conventions and events (World Sickle Cell Day, Warrior Walkathon, Golf Classic), clinical trial resources, gene therapy education, MARAC medical advisories, and the P.O.W.E.R. ECHO Project. SCDAA does not offer an API, AI capabilities, or technical integrations beyond standard business tools (NeonCRM for donations, Constant Contact for email marketing).

Differentiator

Problem solved

Functional benefit

Brands

• SCD C.A.R.E.S. Consortium: An initiative to raise awareness about the importance of clinical trials and why it is beneficial for sickle cell warriors to participate in them.
• P.O.W.E.R. ECHO Project
• CHW Training Program
• Get Connected
• SCDAA National Community Health Worker Training Program
• MedicAlert Pilot Program

Products and services

• National Community Health Worker (CHW) Training Program A comprehensive online skills training and professional development program for aspiring Community Health Workers (CHWs) in sickle cell-related social service and healthcare fields. The 16-section curriculum includes Sickle Cell 101, ethics, communication, advocacy, care coordination, public health, and healthy behavior change, and is accredited by the Maryland Department of Health. Pricing is $1,060 per participant, with partial scholarships available.
• CHW Supervisors Training A specialized online training course for managers and supervisors of Community Health Workers, providing tools for managing CHWs, strategies for community health workers, and professional development skills. Priced at $350 per participant with unlimited access to training materials and final exam.
• SCD C.A.R.E.S. Consortium

Quantifiable outcome

• 684 individuals with sickle cell disease received CHW care coordination in Georgia in 2025, with 330 placed or maintained in routine medical care, resulting in ~$526,680 in estimated cost savings from reduced ED utilization
• +2 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration3 records

Feature3 records

Partnerships

Seven partnerships are on record, tiered flagship, core and minor.

• Sickle Cell Disease CoalitionflagshipStrategic or Co-development Partner · 27 March 2026The Sickle Cell Consortium announced a landmark partnership with the Sickle Cell Disease Coalition to co-host the Unified Action Forum on April 11-12, 2026, following the 10th Annual Leadership Summit (April 7-11, 2026). This creates a week-long collaborative platform bringing together patients, caregivers, clinicians, researchers, and industry leaders.
• Pfizer PharmaceuticalscoreGTM or Marketing Partner · 27 March 2026Pfizer Pharmaceuticals is serving as the Impact Sponsor for the Sickle Cell Consortium's 10th Annual Leadership Summit (April 7-11, 2026, Atlanta, Georgia). As Impact Sponsor, Pfizer provides financial support for the event that brings together over 200 sickle cell organizations.
• MedicAlert FoundationcoreStrategic or Co-development PartnerSCDAA partnered with MedicAlert Foundation to launch a pilot program providing MedicAlert digital health profiles and Smart Medical ID Cards with QR codes to 250 adults with sickle cell disease. The program aims to improve access to timely, effective emergency care by helping ED personnel quickly access patients' physician-approved pain plans and vital health data during sickle cell crises.
• National Alliance of Sickle Cell CentersminorStrategic or Co-development PartnerSCDAA's Medical and Research Advisory Committee (MARAC) suggests connecting with listings in the National Alliance of Sickle Cell Centers for connecting patients with sickle cell experts. SCDAA encourages gene therapy centers to partner with sickle cell centers in the National Alliance.
• The KIS FoundationminorStrategic or Co-development PartnerFounded by KiKi Shepard, an actress and longtime sickle cell advocate and former SCDAA volunteer. The foundation works closely with SCDAA and other organizations in the SCD community. KiKi Shepard served as moderator of the Lonzie Lee Jones Symposium at the 38th Annual National Convention in 2010.
• Sick CellsminorStrategic or Co-development PartnerSCDAA collaborated with Sick Cells on FY24 Legislative Priorities. Sick Cells joined SCDAA and other advocacy organizations in outreach to the Social Security Administration requesting updated disability evaluation criteria for sickle cell disease.
• American Society of Hematology (ASH)minorStrategic or Co-development PartnerSCDAA partnered with ASH on advocacy initiatives including outreach to the Social Security Administration on disability criteria. ASH publishes research and guidance on sickle cell disease and sickle cell trait (including the 2025 report on SCT and exercise).

Scale indicators8 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Sick Cells: Sick Cells is a sickle cell disease patient advocacy organization that collaborates with SCDAA on legislative priorities (including FY24 outreach to the Social Security Administration) and was a fellow recipient of the 2025 ASH Outstanding Service Award. Both organizations serve as patient-facing advocacy voices for the SCD community.
• Sickle Cell Community Consortium: The Sickle Cell Consortium organizes the Annual Leadership Summit that SCDAA members attend, and co-hosts the Unified Action Forum with SCDAA in April 2026. It is a peer national convening body for SCD community-based organizations with comparable membership and event-driven models.
• Sickle Cell Disease Coalition: The Sickle Cell Disease Coalition is a collaborative of public and private organizations working on SCD policy and research. SCDAA partners formally with the Coalition on unified advocacy initiatives including legislative outreach.
• National Alliance of Sickle Cell Centers: The National Alliance of Sickle Cell Centers is a network of clinical centers providing specialized SCD care; SCDAA refers patients to its member centers and partners on gene therapy education. Both organizations operate at the national SCD infrastructure layer, with overlapping but distinct mandates (clinical vs. community).

Broad incumbents

• National Organization for Rare Disorders (NORD): NORD is an umbrella rare-disease advocacy organization representing ~300 patient organizations. It is comparable to SCDAA as a voluntary health organization driving policy, federal grant advocacy, and patient services for a rare disease population, but operates at a much broader multi-disease scale.
• American Society of Hematology (ASH): ASH is the professional society for hematologists that collaborates with SCDAA on advocacy and research dissemination (joint recipient of 2025 ASH Outstanding Service Award; 2025 SCT report). Both organizations shape clinical guidance and policy for SCD, but ASH represents clinicians while SCDAA represents patients.
• Cystic Fibrosis Foundation: The Cystic Fibrosis Foundation is a voluntary health organization with a comparable model—patient advocacy, research funding, federal lobbying, and care programs for a rare genetic disease. It is materially larger and more capitalized but serves as a structural comparison for a single-disease voluntary health entity.
• American Cancer Society: ACS is a large voluntary health organization running patient navigation, advocacy, research funding, and CHW-adjacent programs for cancer. It is comparable as a multi-channel voluntary health nonprofit but operates at vastly greater scale than SCDAA.
• March of Dimes: March of Dimes is a historical voluntary health organization focused on maternal and infant health, including newborn screening—an area directly relevant to SCDAA's HRSA Newborn Screening Follow-Up Program funding. Both rely on federal grant flows, member networks, and awareness campaigns.

Others

• MedicAlert Foundation: MedicAlert Foundation is the partner organization SCDAA collaborated with for the 2023 MedicAlert Pilot Program providing Smart Medical ID Cards to 250 SCD adults. It is not a peer in patient advocacy but is an ecosystem partner enabling SCDAA's emergency-care service delivery.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks7 records

Key highlights7 records

Customer concentration

• Xx.com/SCDAAorg
• Facebookfacebook.com/SickleCellDiseaseAssociationOfAmerica

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Sickle Cell Disease Association of America, Inc.