Sick Cells

What Sick Cells does

Sick Cells is a national 501(c)(3) nonprofit advocacy organization founded in 2017 and headquartered in Washington, DC, with an additional office in Wheaton, Illinois and a recently opened Maryland presence. The organization's mission is to elevate the voices of people living with sickle cell disease (SCD) and their families through advocacy, storytelling, and direct engagement with state and federal policymakers. It serves SCD patients across all hemoglobin types, caregivers, family members, and trained patient advocates, with secondary engagement of community-based organizations, legislators, and Medicaid officials.

The organization's core programs are the Ambassador Program, which recruits and trains a national network of volunteer SCD patient advocates (over 100 engaged nationally), and the Faces of SCD Storytelling Program, which has documented 65+ patient stories. It also maintains an interactive advocacy map covering all 50 US states plus DC, a research and publications arm producing original patient surveys (including a 547-respondent survey submitted to ICER) and Medicaid coverage analyses, and specialized initiatives such as the Hispanic Outreach Promoting Equity (HOPE) Project, Project SCoviD, and a Caregiver Resources Help Desk in partnership with Caregiver Action Network. Technology is not a component of the offering; the platform is human-driven community organizing and policy work.

Sick Cells is funded through three revenue streams: individual donations, corporate sponsorships (Pfizer Gold; Chiesi, Novo Nordisk, and Vertex Pharmaceuticals Silver; Beam Therapeutics Bronze; plus additional pharma supporters and a Corporate Advisory Council), and grants (PCORI Engagement Award, Global Genes Rare Health Equity Grant). All programs, toolkits, and resources are provided free of charge to the SCD community. The organization has earned recognition including the 2025 ASH Outstanding Service Award and has been featured in The New York Times and The New Yorker.

Name

Sick Cells

Legal name

Sick Cells

Website

https://sickcells.org

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

11–50 employees

Short description

Sick Cells is a national 501(c)(3) nonprofit advocacy organization that elevates the voices of people living with sickle cell disease through the Ambassador Program, Faces of SCD storytelling, and direct engagement with state and federal policymakers on coverage and access.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Sickle cell advocacy
• Patient advocacy
• Health policy
• Rare disease nonprofit
• Community organizing

Headquarters

HQ city

Wheaton

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, Others

Revenue model

1. Individual Donations: Sick Cells accepts individual donations through its website to fund operations and programs. Donations support the organization's mission of elevating the sickle cell community's voices through advocacy, storytelling, and policy work.
2. Corporate Sponsorship: Sick Cells is funded by pharmaceutical companies including Pfizer (Gold), Chiesi (Silver), Novo Nordisk (Silver), Vertex Pharmaceuticals (Silver), Beam Therapeutics (Bronze), and supporters including Agios Pharmaceuticals, Bristol Myers Squibb, Fulcrum Therapeutics, and Genetix Biotherapeutics. The organization also maintains a Corporate Advisory Council with members at various tiers (Champion, Founder, Leader, Friend).
3. Grant Funding: Sick Cells has received grant funding including from the PCORI Engagement Award and the Global Genes Rare Health Equity Grant for the Hispanic Outreach Promoting Equity (HOPE) Project.

Go-to-market motion2 records

Distribution channels2 records

Marketing channels7 records

Core offering

Sick Cells is a national 501(c)(3) nonprofit organization that advocates for the sickle cell disease (SCD) community through storytelling, policy engagement, and community organizing. The organization operates programs including the Ambassador Program, which trains volunteer SCD advocates, and the Faces of SCD Storytelling Program, which documents patient stories. It also produces research publications, advocacy toolkits, and educational resources provided free of charge to patients, caregivers, and policymakers.

Product overview

Sick Cells is a national advocacy nonprofit for sickle cell disease (SCD) that operates a collection of programs and resources rather than a traditional product platform. Its core offerings include the Ambassador Program, which trains volunteer advocates to educate and mobilize the SCD community, and the Faces of SCD Storytelling Program, which documents patient stories to eliminate stigma. The organization also provides an extensive Advocacy Tools library with state-specific resources, a Sickle Cell Resources library with educational materials, and specialized initiatives like Project SCoviD for COVID-19 outreach, the Caregiver Resources Help Desk in partnership with Caregiver Action Network, and the Hispanic Outreach Promoting Equity (HOPE) Project. Research publications covering Medicaid access, health equity, and patient burden support the organization's advocacy mission.

Differentiator

Problem solved

Functional benefit

Products and services

• Ambassador Program A volunteer network of sickle cell advocates that provides training and tools to educate the SCD community, connect stakeholders, and activate advocacy through partnerships and ongoing communication.
• Faces of SCD Storytelling Program A storytelling initiative that documents and elevates the voices of people living with sickle cell disease and their support systems to highlight resilience and eliminate stigma.
• Advocacy Tools and Toolkits A collection of advocacy toolkits, state-specific resources, and interactive maps providing guidance for individuals to develop and implement sickle cell advocacy strategies at local and federal levels.
• Sickle Cell Resources Library A comprehensive library of sickle cell disease education materials, data research, clinical guidelines, and treatment information for patients, caregivers, and medical professionals.
• Hispanic Outreach Promoting Equity (HOPE) Project A project focused on understanding how race and ethnicity impact the experiences of Hispanic individuals with sickle cell disease, including educational tools and roundtable discussions.
• Research Publications Reports, white papers, surveys, and research findings on Medicaid access, health equity, patient preferences, and the burden of sickle cell disease to drive advocacy work.
• Caregiver Resources and Help Desk A partnership with Caregiver Action Network providing resources, a help desk, journey maps, and support services for caregivers of people living with sickle cell disease.

Quantifiable outcome

• Over 100 SCD advocates recruited and engaged nationally through the Ambassador Program
• +3 more outcomes

Segments6 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

16 partnerships are on record, tiered core and minor.

• Sickle Cell Disease Association of America (SCDAA)coreStrategic or Co-development PartnerSick Cells is a member of the Sickle Cell Disease Association of America, a national organization representing the sickle cell community. Sick Cells collaborates with SCDAA on policy forums, legislative advocacy, and community organizing efforts.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerSick Cells holds Platinum membership in NORD, the leading independent organization representing the 25-30 million Americans with rare diseases. This membership supports Sick Cells' advocacy within the broader rare disease community.
• Innovation and Value Initiative (IVI)coreStrategic or Co-development PartnerSick Cells partnered with IVI to publish a joint white paper on Finding Equity in Value, contributing the patient and sickle cell community perspective to value assessment methodologies in healthcare.
• Sickle Cell Disease CoalitioncoreStrategic or Co-development PartnerSick Cells is a member of the Sickle Cell Disease Coalition, a group of organizations working to advance policies and research for the SCD community.
• Blood Health Network (NHLBI)minorStrategic or Co-development PartnerSick Cells is a member of the Blood Health Network, an initiative of the National Heart, Lung, and Blood Institute (NHLBI) focused on blood health education and awareness.
• Rare Hub by EveryLife FoundationminorStrategic or Co-development PartnerSick Cells participates in the Rare Hub by EveryLife Foundation, which provides resources and advocacy support for rare disease communities.
• Vertex PharmaceuticalscoreStrategic or Co-development PartnerVertex Pharmaceuticals is a Silver Level sponsor of Sick Cells. Sick Cells collaborated with Vertex on the Health-Related Quality of Life Survey for sickle cell disease patients, and Vertex is developing gene therapies for SCD (exa-cel).
• Quilt HealthcoreStrategic or Co-development PartnerQuilt Health is a Founder Level member of Sick Cells' Corporate Advisory Council, providing strategic support to the organization's mission.
• University of PittsburghminorStrategic or Co-development PartnerSick Cells collaborated with the University of Pittsburgh to study barriers to accessing disease-modifying treatments for sickle cell disease.
• Artia SolutionsminorImplementation/ SI/ Consulting PartnerSick Cells contracted Artia Solutions to conduct comprehensive analyses of coverage policies for SCD therapies across all 50 state Medicaid programs and managed care organizations.
• University of Southern California Hematology Utilization Group Studies (USC HUGS)minorStrategic or Co-development PartnerSick Cells collaborated with USC HUGS as part of the PCORI Engagement Award to identify and assess core elements of value for SCD research measures.
• Comparative Health Outcomes, Policy, and Economics (CHOICE) Institute, University of WashingtonminorStrategic or Co-development PartnerSick Cells collaborated with the CHOICE Institute at University of Washington School of Pharmacy on defining value and supporting equity in sickle cell disease research.
• QC MedicaminorStrategic or Co-development PartnerSick Cells partnered with QC Medica to survey individuals living with sickle cell disease on the impacts of the disease on quality of life and health quality.
• National Donor Marrow Program (NDMP)minorStrategic or Co-development PartnerSick Cells collaborated with NDMP and SC RED on the Transplant Equity and Awareness for Sickle Cell Disease (TEA for SCD) project to increase stem cell donation awareness.
• Sickle Cell Reproductive Health Education Directive (SC RED)minorStrategic or Co-development PartnerSick Cells partnered with SC RED on the TEA for SCD project to raise awareness about bone marrow transplant as a treatment option for sickle cell disease.
• Caregiver Action NetworkminorStrategic or Co-development PartnerSick Cells partnered with Caregiver Action Network to provide comprehensive resources and a Help Desk for sickle cell disease caregivers.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• National Hemophilia Foundation: A chronic-disease patient advocacy nonprofit that combines research funding, policy advocacy, and community programs — a similar integrated advocacy model to Sick Cells, though serving hemophilia rather than SCD. Comparable in structure, funding mix (pharma + individual donations), and policy focus on payer access.
• American Sickle Cell Anemia Association (ASCAA): A national SCD-focused nonprofit delivering patient education, community programs, and advocacy support. ASCAA is comparable to Sick Cells in mission and disease focus, with overlapping work in patient storytelling, awareness, and treatment-access advocacy.
• EveryLife Foundation for Rare Diseases: A rare disease advocacy nonprofit focused on accelerating biotech innovation and access for rare disease communities. Directly comparable to Sick Cells in advocacy model — policy engagement, community mobilization, and federal agency comments — but operating across all rare diseases rather than a single condition.
• Sickle Cell Disease Association of America (SCDAA): The longest-standing national SCD advocacy nonprofit, providing patient services, research, and policy advocacy. SCDAA is Sick Cells' most direct peer — both serve the same disease community with overlapping policy and community engagement mandates, though SCDAA is older and larger.
• Sickle Cell Foundation of Georgia: A long-running regional SCD nonprofit providing patient education, support services, and advocacy. It is comparable to Sick Cells as a sickle cell-focused advocacy and community-support organization, though it operates at a state rather than national scale.

Broad incumbents

• Susan G. Komen: A large disease-specific patient advocacy nonprofit combining research funding, community programs, and policy advocacy. Komen is a comparable model for Sick Cells at much greater scale, especially in grassroots mobilization and corporate partnership structures.
• Muscular Dystrophy Association (MDA): A disease-specific patient advocacy nonprofit funding research, providing care services, and driving policy. MDA shares Sick Cells' integrated advocacy-plus-patient-services model and pharma-funded sponsorship structure, though at a much larger scale.
• Cystic Fibrosis Foundation: A large disease-specific patient advocacy nonprofit that funds research, drives policy, and supports patients. Highly comparable to Sick Cells in the integrated advocacy-plus-research-plus-community model, though much larger and focused on CF rather than SCD.
• National Organization for Rare Disorders (NORD): The largest US rare disease umbrella advocacy organization. Sick Cells holds Platinum membership in NORD; both engage in federal policy advocacy and community support, but NORD operates across all rare diseases while Sick Cells is disease-specific.

Others

• Sickle Cell Disease Coalition: An umbrella coalition of SCD-focused organizations in which Sick Cells is a member. Comparable as a convening body that aligns SCD advocacy efforts across member organizations, serving as an enabling/ecosystem participant rather than a direct competitor.

Market position

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/SickCells
• Instagraminstagram.com/sickcells
• LinkedInlinkedin.com/company/sickcells

Revenue estimate

Valuation estimate

Number of profiles

Profiles14 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Sick Cells