Sickle Cell 101

What Sickle Cell 101 does

Sickle Cell 101 (SC101) is a U.S. 501(c)(3) nonprofit founded in 2013 by Cassandra Trimnell and headquartered in Silicon Valley, California, that delivers free sickle cell disease and sickle cell trait education to a global audience of patients, caregivers, healthcare providers, and researchers. The organization's primary beneficiaries are the 70%+ of users who live with sickle cell disease; secondary audiences include caregivers, hematologists, primary care providers, and academic researchers. SC101 also acts as a patient advocacy and data intermediary on behalf of the community, including founding membership in the Global Alliance for Sickle Cell Disease Organizations (GASCDO).

SC101 operates a multi-platform digital ecosystem comprising: (1) a Learn Center anchored by the Sicklepedia patient-friendly encyclopedia and downloadable fact sheets; (2) The Sickle Cell Podcast on Spotify/Anchor; (3) educational initiatives covering Care & Treatment, Curative Therapies, Research, and a forthcoming Living Well track; (4) awareness campaigns including the SCAY Awards, World Sickle Cell Day (June 19), Sickle Cell Trait Awareness Month, National Sickle Cell Awareness Month, and the NFL My Cause My Cleats partnership; (5) the #OurVoice Global Survey, a bi-annual, multinational community-powered data initiative launched in 2017 with ~30 participating countries; and (6) the Sickle Cell Studies platform (scdstudies.com, launched May 2021), a patient-friendly clinical-trial and research hub. Distribution is exclusively digital — owned website (sc101.org), Facebook, Twitter/X, Instagram, YouTube, email newsletter, Spotify podcast — reaching 3M+ users annually across 130+ countries with 70,000+ combined social followers.

SC101 is funded through donations and grants/sponsorships rather than product sales; all educational content is provided free of charge. Key revenue partners include Novo Nordisk (Platinum Elite sponsor of #OurVoice), Vertex and Agios (Platinum), Beam Therapeutics (Gold), Pfizer (flagship drug-development partner), and NIH-NHGRI (INSIGHTS study). Other pharma partners for 2025–2026 include Editas Medicine, Chiesi Rare Diseases, and bluebird bio, alongside institutional partners such as UCSF Benioff Children's Hospital, Stanford, UC Berkeley (Lawrence Hall of Science), University of Pittsburgh, NMDP (Be The Match), 23andMe, and Sick Cells. The organization operates with a 1–10 person team supplemented by a board chaired by Angela Ehrlich, with Dr. Keith Quirolo (formerly Director of the Pediatric Sickle Cell Program at UCSF Benioff Oakland) as Chief Medical Officer.

Name

Sickle Cell 101

Legal name

Sickle Cell 101

Website

https://sc101.org

Company type

Private

Founded year

2013

Operating status

Operating

Headcount range

1–10 employees

Short description

Sickle Cell 101 is a U.S. 501(c)(3) nonprofit that delivers free digital sickle cell disease and trait education through websites, a podcast, and social media to patients, caregivers, clinicians, and researchers across 130+ countries, supported by donations and pharma sponsorships.

Ownership category

akta.pro rank

Headquarters

HQ city

San Ramon

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, Technology or R&D

Revenue model

1. Donations: Individual and corporate donations from supporters of sickle cell education and awareness.
2. Grants and Sponsorships: Funding from pharmaceutical partners (Novo Nordisk, Pfizer, Agios, Vertex, Beam), grants from organizations like NIH-NHGRI, and platinum/gold sponsor partnerships for the OurVoice initiative.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

Sickle Cell 101 is a nonprofit health education organization that provides digital sickle cell disease and trait education through the Learn Center, Sicklepedia encyclopedia, podcast, fact sheets, and awareness campaigns. It also operates the #OurVoice Global Survey to generate community insights and the Sickle Cell Studies platform to connect patients with clinical trials. All educational resources are provided free of charge to patients, caregivers, healthcare providers, and advocates worldwide.

Product overview

Sickle Cell 101 is a nonprofit health education organization operating a multi-platform digital ecosystem for sickle cell disease and trait education. The core offering consists of the Learn Center (featuring Sicklepedia encyclopedia) and The Sickle Cell Podcast for foundational education. Supporting programs include educational initiatives (Care and Treatment 101, Curative Therapies 101, Research 101), awareness campaigns (SCAY Awards, World Sickle Cell Day, Sickle Cell Trait Awareness Month, National Sickle Cell Awareness Month), the #OurVoice Global Survey for community-driven data, and the Sickle Cell Studies research hub. A key collaboration with Pfizer (Understanding Drug Development in Sickle Cell) provides specialized content on drug development processes. All offerings are accessible through digital platforms including social media, email newsletter (Mailchimp), and downloadable fact sheets (Dropbox). The organization functions as a content and data-driven educational platform rather than a traditional software product.

Differentiator

Problem solved

Functional benefit

Products and services

• Learn Center A community-friendly digital resource center providing educational content about sickle cell disease and sickle cell trait through videos, FAQs, Sicklepedia encyclopedia, fact sheets, and expert Q&A for patients, caregivers, and the broader community.
• Sicklepedia

Quantifiable outcome

• Over 3 million users reached annually through digital platforms
• +4 more outcomes

Named customers5 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

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

• UCSF Benioff Children's HospitalcoreStrategic or Co-development PartnerPartnership for emergency department education on providing care to sickle cell patients in Alameda Health Systems. Sickle Cell 101 collaborated with UCSF Benioff Children's Hospital Oakland to educate healthcare providers.
• Pfizer Inc.flagshipStrategic or Co-development PartnerCollaborative educational initiative 'Understanding Drug Development in Sickle Cell' designed to close knowledge gaps in the sickle cell community about the complex journey of drug development, from clinical trials to regulatory approval and treatment access.
• Editas MedicineminorStrategic or Co-development Partner2025-2026 partner supporting sickle cell education and awareness initiatives.
• ChiesiminorStrategic or Co-development Partner2025-2026 partner supporting sickle cell education and awareness initiatives through Chiesi Rare Diseases.
• bluebird biocoreStrategic or Co-development Partner2025-2026 partner and collaborator on 'Be The Spark for Sickle Cell' resource platform dedicated to sickle cell advocacy and empowerment. Also collaborated on gene therapy education campaigns.
• NMDP (Be The Match)coreStrategic or Co-development PartnerPartnership with Be The Match for bone marrow transplant education and awareness, including patient stories and donor registry promotion.
• NIH-NHGRIcoreStrategic or Co-development PartnerPartnership on the INSIGHTS study to create and distribute an online survey on the burden of the COVID-19 pandemic on individuals with sickle cell disease.
• University of PittsburghcoreStrategic or Co-development PartnerLeading an arm of the CaRISMA study which uses a chatbot to provide sickle cell education and cognitive behavior therapy to help reduce the burden of pain in sickle cell disease.
• Stanford UniversitycoreStrategic or Co-development PartnerAnnual education provided to Stanford University's pre-medicine program providing holistic material on sickle cell disease and sickle cell trait from multiple stakeholder perspectives.
• UC Berkeley (Lawrence Hall of Science)minorStrategic or Co-development PartnerCollaboration with Lawrence Hall of Science to provide educational material for a video series on sickle cell education.
• 23andMecoreStrategic or Co-development PartnerCollaboration to provide education and free resources to those unaware of their sickle cell trait status, expanding the Summer Sickle Cell Trait Awareness Campaign.
• Emmaus Life SciencesminorStrategic or Co-development PartnerPartnership sponsor for SCAY Awards and other sickle cell education initiatives.
• Global Alliance for Sickle Cell Disease Organizations (GASCDO)coreStrategic or Co-development PartnerFounding member of this global patient advocacy organization working to advance sickle cell disease awareness and resources worldwide.
• Aruvant SciencesminorStrategic or Co-development PartnerPartnership for educational campaign on gene therapy for sickle cell disease, including social media posts and podcast episodes featuring patient experiences.
• Cleveland Browns / Donovan Peoples-JonescoreGTM or Marketing PartnerNFL's My Cause My Cleats partnership where wide receiver Donovan Peoples-Jones selected Sickle Cell 101 as his charity of choice to raise awareness, education, and research funding for sickle cell.
• Sick CellsminorStrategic or Co-development PartnerPartnership on the #FundSickleCell campaign advocating for $25 million in sickle cell research funding from U.S. Congress.

Scale indicators8 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• NMDP / Be The Match: National bone marrow donor registry that partners with Sickle Cell 101 on transplant education. Overlap is adjacent—transplant education for the SCD community—rather than a direct sickle cell advocacy competitor.
• National Institutes of Health – NHLBI Sickle Cell Disease Program: Federal health agency shaping SCD research, policy, and public education. SC101's founder participates in its Sickle Cell Disease Advisory Committee, indicating overlapping education and advocacy scope at the national level.
• American Society of Hematology – Sickle Cell Disease Coalition: ASH-led multi-stakeholder SCD initiative of which SC101's founder is a member. Operates at the professional/clinician level and shapes SCD awareness, providing an overlapping institutional advocacy and education function.

Regional players

• Sickle Cell Disease Foundation of California: California-focused SCD nonprofit based in the same U.S. state as Sickle Cell 101. Operates complementary education, support, and patient navigation programs for overlapping patient and caregiver segments.
• Sickle Cell Foundation of Georgia: Regional SCD patient-services and education nonprofit. Comparable disease-specific education and patient support mission, but serves a different U.S. geographic market than SC101's nationwide/global digital reach.

Direct peers

• Cayenne Wellness Center: California-based sickle cell advocacy and education nonprofit serving the same patient population. Comparable mission, geographic overlap (San Ramon/Bay Area), and overlapping community events and programs.
• Sick Cells: U.S.-based sickle cell disease patient advocacy nonprofit. Co-partnered with Sickle Cell 101 on the #FundSickleCell congressional funding campaign, indicating highly overlapping mission, audience, and donor base.
• Sickle Cell Community Consortium: Coalition of sickle cell patient organizations. Comparable grassroots advocacy orientation, focuses on community-based SCD support and education similar to SC101's community-led approach.
• Global Alliance for Sickle Cell Disease Organizations (GASCDO): Global coalition of which SC101 is a founding member. Operates in the same global SCD advocacy and education space with overlapping international stakeholder relationships.
• Sickle Cell Disease Association of America (SCDAA): National U.S. umbrella organization for sickle cell advocacy and education. Granted SC101's founder its Champion and Community Champion Awards; competes for similar sponsorships and patient-community mindshare.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/sicklecell101
• YouTubeyoutube.com/sicklecell101
• Facebookfacebook.com/SickleCell101
• Instagraminstagram.com/sicklecell101

Revenue estimate

Valuation estimate

Number of profiles

Profiles10 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Sickle Cell 101