Aplastic Anemia & Myelodysplasia Association of Canada

What Aplastic Anemia & Myelodysplasia Association of Canada does

The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a federally registered Canadian charity founded in 1987 (Charitable Registration No. 87557 2265 RR0001) that supports patients and care partners living with three rare bone marrow failure diseases: aplastic anemia (AA), myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH). The organization is operated by a small team of approximately seven staff who are described as almost entirely volunteer members, under the leadership of Executive Director Cindy Anthony. Its national office is located in Brighton, Ontario, and it maintains a national footprint across Canada.

AAMAC's service portfolio centers on patient support and education rather than technology products. Core offerings include telephone and email peer-to-peer support, a quarterly newsletter, printed and online educational materials, Emergency Room Wallet Cards designed for use in acute medical situations, and a Patient Progress Tracker ("Carnet de route") tool that helps patients log appointments, test results, and treatments. The organization also curates clinical trial information — currently highlighting the MEDALIST trial for MDS at Juravinski Cancer Centre, Princess Margaret Hospital, and Odette Cancer Centre — and delivers in-person and virtual support groups in at least seven Canadian cities (Ottawa, London, Hamilton, Edmonton, Quebec City, Toronto, and Halifax). Underlying infrastructure consists of the aamac.ca website, email communications, online donation processing, and virtual meeting capabilities.

AAMAC is funded almost exclusively through charitable giving. Revenue streams include one-time and recurring individual donations (via credit card, PayPal, mail, and the CanaDon/CanadaHelps platform), planned giving and testamentary bequests, vehicle donations processed through Donate A Car Canada, and securities donations transferred directly from donor brokerage accounts. The organization does not sell products or services, has no disclosed revenue or budget figures, and operates without a parent company. Its international engagement is limited to participation in the multistakeholder Partnering4PNH policy initiative alongside patient organizations and clinicians in Europe and Australia.

Name

Aplastic Anemia & Myelodysplasia Association of Canada

Legal name

Aplastic Anemia & Myelodysplasia Association of Canada

Website

https://aamac.ca

Company type

Private

Founded year

1987

Operating status

Operating

Headcount range

1–10 employees

Short description

AAMAC is a Canadian registered charity founded in 1987 that supports patients with aplastic anemia, MDS, and PNH through peer-to-peer support, educational resources, support groups, and research funding across Canada.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

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

Keywords

• Patient advocacy services
• Bone marrow failure
• Rare disease support
• Peer support programs
• Health education resources

Headquarters

HQ city

Brighton

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. Individual Donations: One-time and monthly donations from individual supporters made online via credit card, PayPal, or by mail. Tax receipts issued for donations.
2. Planned Giving: Testamentary bequests and legacy gifts included in supporters' wills to provide long-term funding for the organization
3. Vehicle Donations: Accepts vehicle donations through Donate A Car Canada, which handles pickup and sale of donated vehicles
4. Securities Donations: Donors can transfer securities directly to the organization through their brokerage
5. CanaDon Platform: Third-party donation processing through CanadaHelps.org platform

Go-to-market motion2 records

Distribution channels4 records

Marketing channels5 records

Core offering

AAMAC is a Canadian registered charity that funds research into bone marrow failure diseases and delivers patient support services, including telephone and email peer-to-peer support, educational materials, a quarterly newsletter, and local support group meetings. It serves Canadians living with aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH), along with their care partners.

Product overview

The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a non-profit patient advocacy organization, not a technology product company. Its services consist of patient support programs including peer-to-peer support, educational materials, emergency wallet cards for AA/MDS/PNH patients, a patient progress tracker tool, clinical trial information resources, and educational presentations. The organization does not offer a software platform or technology product.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Support Services Peer-to-peer telephone and email support, educational materials, quarterly newsletters, and local support group meetings for Canadian patients with aplastic anemia, MDS, and PNH and their care partners.
• Emergency Room Wallet Cards Wallet-sized emergency information cards for patients with aplastic anemia, MDS, and PNH to present in emergency medical situations.
• Patient Progress Tracker (Carnet de route) A patient-facing tool to help track healthcare appointments, test results, treatments, and other contacts as patients manage their bone marrow failure disease.
• Clinical Trial Information Service Curated information on active clinical trials for MDS patients, with links to ClinicalTrials.gov and listings of Canadian trial sites including Juravinski Cancer Centre, Princess Margaret Hospital, and Odette Cancer Centre at Sunnybrook Hospital.
• Educational Resources and Presentations A library of presentations, brochures, newsletters, and disease management materials covering aplastic anemia, MDS, PNH, treatment options, and patient care, including an archive of medical presentations from Canadian healthcare professionals spanning decades of educational conferences.

Named customers4 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

Feature3 records

Partnerships

Six partnerships are on record, tiered core and minor.

• Partnering4PNHcoreStrategic or Co-development Partner · 7 December 2022A global multistakeholder policy initiative bringing together PNH specialized healthcare professionals, nurses, patients, and patient organizations from Europe, Canada, and Australia. AAMAC's Executive Director participates in multi-stakeholder conferences addressing PNH unmet medical needs.
• Sick Kids HospitalcoreStrategic or Co-development PartnerPartnership with The Hospital for Sick Children (Sick Kids) in Toronto to host the annual Marrow Failure & Myelodysplasia (MFM) Patient and Family Conference, providing educational programming for patients and families.
• Juravinski Cancer Centre at Hamilton Health SciencescoreStrategic or Co-development PartnerClinical trial site for MDS research, participating in the MEDALIST clinical trial for patients with MDS.
• Princess Margaret HospitalcoreStrategic or Co-development PartnerClinical trial site for MDS research, participating in the MEDALIST clinical trial for patients with MDS.
• Odette Cancer Centre at Sunnybrook HospitalcoreStrategic or Co-development PartnerClinical trial site for MDS research, participating in the MEDALIST clinical trial for patients with MDS.
• Canadian Association of PNH PatientsminorGTM or Marketing PartnerNational patient organization representing PNH patients in Canada, with its President Barry Katsof participating in Partnering4PNH initiatives alongside AAMAC.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): US-based umbrella rare disease advocacy organization serving as a federation of disease-specific patient organizations. Comparable as a broader rare disease advocacy body that competes for donor attention and policy influence with single-disease organizations like AAMAC.
• Canadian Cancer Society: Canada's largest national cancer charity with broad research funding and patient support programming. Comparable as a major Canadian donor-funded health nonprofit that captures a share of charitable giving that could otherwise flow to disease-specific organizations like AAMAC.
• Leukemia & Lymphoma Society of Canada: Canadian arm of the largest blood cancer nonprofit, funding research and providing patient support for leukemia, lymphoma, MDS, and other blood cancers. Comparable as a national Canadian nonprofit serving MDS patients with broader portfolio.
• Canadian Organization for Rare Disorders (CORD): Canada's national network for rare disease patient organizations. Comparable as a Canadian umbrella advocacy body that AAMAC could partner with or compete against for rare disease policy influence and donor attention.

Others

• Canadian Blood Services: Canada's national blood operator with programs relevant to bone marrow failure patients including stem cell registry services. Comparable as an adjacent Canadian healthcare organization with overlapping patient population and potential partnership pathways.

Direct peers

• MDS Foundation: International nonprofit focused specifically on myelodysplastic syndromes, providing patient education, professional resources, and research support. Closely comparable disease-specific focus with overlap in MDS patient support and clinical trial education.
• Aplastic Anemia and MDS International Foundation: Largest US-based nonprofit serving patients with aplastic anemia, MDS, and PNH. Directly comparable to AAMAC as the most established patient advocacy organization for the same three disease areas in a neighboring market.
• Canadian Association of PNH Patients: National Canadian patient organization specifically focused on PNH. Direct peer with overlapping PNH patient constituency; AAMAC's President Barry Katsof participates in Partnering4PNH alongside this organization.
• PNH Alliance: Global advocacy organization dedicated to paroxysmal nocturnal hemoglobinuria patients and families. Directly comparable to AAMAC's PNH programming and the Partnering4PNH multistakeholder policy work.

Emerging players

• Rare Disease Foundation: Canadian nonprofit supporting patients and families affected by rare diseases, with research micro-grant programs. Comparable in the Canadian rare-disease advocacy and patient support space, though with a broader disease mandate than AAMAC.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/aplastic-anemia-&-myelodysplasia-association-of-canada

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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