Sickle Cell Awareness Group of Ontario

What Sickle Cell Awareness Group of Ontario does

Sickle Cell Awareness Group of Ontario (SCAGO) is a registered Canadian charity founded on June 14, 2005, originally as the Seed of Life Philanthropic Organization (SOLPO) by Lanre and Timothy Tunji-Ajayi in memory of Sunday Afolabi. The organization provides evidence-based support to individuals and families affected by sickle cell disease (SCD) across Ontario, serving 2,500+ members through a portfolio of programs that include adult peer support groups (virtual and in-person), short-term counselling, Patient Wellbeing Coordinators operating across Ontario's regions, the Sunday Afolabi Scholarship ($2,000/year), emergency grants (up to $500/year), and the Respite, Emergency, and Transportation (RET) Support program ($170/family/year). Education offerings comprise accredited E-Courses for healthcare providers, hybrid Learning for Life sessions, and disease management training. In 2026, SCAGO launched the Youth Empowerment Program, funded by Employment and Social Development Canada's Canada Service Corps Microgrant Program, providing up to $5,000 micro-grants to youth ages 15-30 for SCD-related community projects.

SCAGO has no proprietary technology platform; its infrastructure is built on a multi-channel marketing stack (website, Twitter/X, Facebook, Instagram, TikTok, LinkedIn, YouTube, bi-weekly email newsletter, WhatsApp forum) and event-driven engagement (annual Sickle Cell Disease Summit, Action Days at Queen's Park, webinars). In 2025 it introduced the Hospital Experience Reporting Portal (HERP) to track patient healthcare experiences, and transitioned Learning for Life sessions from virtual to hybrid format. The 2026 Sickle Cell Disease Summit is a two-day in-person event themed "From Breakthroughs to Better Lives: Transforming Care Across the Sickle Cell Journey," convening patients, families, clinicians, researchers, and health system leaders.

SCAGO operates a charitable nonprofit revenue model funded by individual donations, monthly giving programs, and grants from government agencies and foundations. In 2025, the organization received its first million-dollar grant. Funders include Employment and Social Development Canada (Youth Empowerment Program), the Public Health Agency of Canada (Vaccine Equity Studies), and Black Creek Community Health Centre (RET Support). Services are provided at no cost to beneficiaries. The organization is headquartered at 330-5109 Steeles Ave W, North York, Ontario, with 11-50 employees, and operates within Ontario only with no global footprint claim.

Name

Sickle Cell Awareness Group of Ontario

Legal name

Sickle Cell Awareness Group of Ontario

Website

https://sicklecellanemia.ca

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

11–50 employees

Short description

SCAGO is a registered Ontario charity founded in 2005 that provides peer support, counselling, financial grants, advocacy, and accredited healthcare-provider education to individuals and families affected by sickle cell disease, serving 2,500+ members across Ontario.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Disease Support Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Patient Advocacy, Navigation & Access to Care (BPAGACAH)

Keywords

• Patient advocacy services
• Sickle cell support
• Community health programs
• Disease awareness education
• Charitable health services

Headquarters

HQ city

North York

HQ country

Canada

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: SCAGO relies on donations from individuals and organizations to fund its programs and operations. Monthly giving programs are promoted to provide sustained support for the organization.
2. Government and Foundation Grants: The organization receives grants from government agencies and foundations. In 2025, SCAGO received its first million-dollar grant. Funding sources include Employment and Social Development Canada (Canada Service Corps Microgrant Program), Public Health Agency of Canada, and Black Creek Community Health Centre.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels11 records

Core offering

SCAGO is a charitable patient organization that delivers evidence-based support, advocacy, and education to individuals and families affected by sickle cell disease across Ontario. Its offerings include peer support groups, counselling, scholarships, emergency grants, micro-grants for youth projects, accredited e-courses for healthcare providers, an annual Summit, and policy advocacy that has influenced Ontario drug program coverage and hemoglobinopathy clinic funding.

Product overview

SCAGO is a charitable patient organization (not a technology company) offering a portfolio of patient support and advocacy programs for individuals and families affected by sickle cell disease in Ontario. The organization provides peer support groups, counselling services, and financial support including the Youth Empowerment Program (with up to $5,000 micro-grants), the Sunday Afolabi Scholarship ($2,000/year), and emergency grants (up to $500/year). Educational offerings include accredited e-courses for healthcare providers, Learning for Life sessions, and disease management education. Annual programs include the Sickle Cell Disease Summit and advocacy initiatives including the Hospital Experience Reporting Portal (HERP). The organization also facilitates community connections through WhatsApp forums, Facebook groups, and newsletters.

Differentiator

Problem solved

Functional benefit

Products and services

• Sickle Cell Disease Summit Annual two-day in-person gathering bringing together patients, families, clinicians, researchers, and health system leaders to share knowledge and drive improvements in sickle cell care.
• Adult Peer Support Group Continuous entry peer support group for adults with sickle cell disease and their family members/caregivers, facilitated by volunteer co-facilitators.
• Counselling Support Free short-term counselling (2-3 sessions) available virtually or by phone for individuals and caregivers affected by sickle cell disease.
• Youth Empowerment Program Initiative funded by Employment and Social Development Canada's Canada Service Corps Microgrant Program providing up to $5,000 micro-grants and leadership development for youth ages 15-30 affected by sickle cell disease.
• Respite, Emergency, and Transportation (RET) Support Program providing respite support of $170/family/year to help caregivers take breaks, supported by the Black Creek Community Health Centre grant.
• Sunday Afolabi Scholarship $2,000/year scholarship for eligible students affected by sickle cell disease.
• Emergency Support Grants Up to $500/year in emergency financial support for families affected by sickle cell disease.
• Patient Wellbeing Coordinators Coordinators providing direct support to individuals living with sickle cell disease in navigating hospital care and accessing community services and social supports across Ontario regions.
• Healthcare Provider E-Courses Accredited e-learning courses for healthcare providers to ensure people living with sickle cell disease receive equitable, quality care in Ontario hospitals.
• Learning for Life Sessions Educational sessions covering topics like gene therapy, blood transfusion, and pain management, delivered in hybrid format since 2025.
• Hospital Experience Reporting Portal (HERP) Portal established in 2025 to track and report hospital experiences of sickle cell disease patients across Ontario healthcare facilities.

Quantifiable outcome

• Successfully advocated for Ontario Drug Program approval of life-saving drugs for iron overload treatment for all with sickle cell disease regardless of financial status.
• +2 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Four partnerships are on record, tiered core and minor.

• Black Creek Community Health Centre (BCCHC)coreStrategic or Co-development Partner · 1 January 2025BCCHC supports sickle cell disease's mental health program by providing a grant to SCAGO for its psychosocial and respite program. The partnership enables the Respite, Emergency, and Transportation (RET) Support program, providing $170/family/year for respite support to caregivers of individuals with sickle cell disease.
• Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID)coreStrategic or Co-development Partner · 1 January 2024GANSID is a global network of patient organizations. SCAGO, alongside other GANSID member organizations, submitted reimbursement feedback to Canada's Drug Agency (CDA) for CASGEVY gene therapy and has been instrumental in getting Bill S-288 introduced for National Inherited Blood Disorders Awareness Day.
• Thalassemia Foundation of CanadacoreStrategic or Co-development Partner · 1 January 2021SCAGO and the Thalassemia Foundation of Canada collaborated to introduce Bill 255 (Provincial Sickle Cell Awareness Day and Thalassemia Awareness Day), which passed on June 3, 2021. They have also held joint Action Days at Queen's Park and collaborated on advocacy efforts for hemoglobinopathy clinics funding.
• Ontario Hemoglobinopathy Patient Association (OHPA)minorStrategic or Co-development Partner · 1 January 2017SCAGO collaborated with OHPA and Thalassemia Foundation of Canada in advocacy efforts that resulted in Ministry of Health approval for funding of five Hemoglobinopathy Clinics in Ontario on March 1, 2022.

Scale indicators7 records

Recent moves7 records

Expansion highlights6 records

Others

• SickKids Foundation: Major Canadian pediatric hospital foundation providing care and research for children with sickle cell disease. Adjacent ecosystem partner rather than a direct peer, but comparable in scale of healthcare fundraising and patient-family support services.
• Canadian Organization for Rare Disorders (CORD): Canada's national network for organizations representing rare disease patients, including sickle cell disease. Comparable as an umbrella advocacy organization, though broader in scope (all rare diseases) rather than SCD-specific.
• Black Creek Community Health Centre: Community health centre that partners with and provides grant funding to SCAGO for respite and mental-health programs. Comparable as a community-based health services provider in Ontario, though broader in scope than SCD-specific work.
• Thalassaemia International Federation: International non-profit umbrella organization working on thalassemia and related inherited blood disorders including sickle cell disease. A globally-focused peer in the same broader disease category, focused on policy and clinical standards rather than direct patient services.

Regional players

• Sickle Cell Foundation of Georgia: US state-level sickle cell disease patient organization providing education, counseling, and patient support in Georgia. Highly comparable in service mix and community-based advocacy model, but operating in a different geography.
• Sickle Cell Society: The UK's national sickle cell charity, providing support, advocacy, and information services to people affected by SCD. Operates a similar patient-support + policy-advocacy model to SCAGO but in a different geography (UK vs. Ontario).

Direct peers

• Ontario Hemoglobinopathy Patient Association (OHPA): Ontario-based patient association for hemoglobinopathies that co-advocated with SCAGO for the 2022 Ministry of Health funding of five Hemoglobinopathy Clinics. Directly comparable patient-advocacy peer in the same geography and disease category.
• Thalassemia Foundation of Canada: Canadian patient organization serving individuals with thalassemia, an inherited blood disorder closely related to sickle cell disease. Co-advocate with SCAGO on Bill 255, Hemoglobinopathy Clinic funding, and Action Days at Queen's Park, making it the most directly comparable peer.
• Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID): Global network of patient organizations focused on sickle cell and inherited blood disorders; SCAGO is a member and partner on Bill S-288 and CASGEVY reimbursement submissions. Highly comparable as a peer patient-organization convener, operating globally rather than provincially.

Broad incumbents

• Sickle Cell Disease Association of America: The largest US national patient advocacy organization for sickle cell disease, providing a comparable mix of patient support, advocacy, and education programs across a much larger jurisdiction. Comparable in mission and program portfolio, though operating at national US scale.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xtwitter.com/SCAGOSCD
• YouTubeyoutube.com/channel/UCdIN-TWIR1m_DPf-9iiRjCA
• Facebookfacebook.com/SCAGOSCD
• LinkedInlinkedin.com/company/sickle-cell-awareness-group-of-ontario
• Instagraminstagram.com/scago.1
• TikToktiktok.com/@scagoscd

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Sickle Cell Awareness Group of Ontario