Canadian Osteogenesis Imperfecta Society

What Canadian Osteogenesis Imperfecta Society does

The Canadian Osteogenesis Imperfecta Society (COIS) is a registered Canadian charity (CRA #11883 4928 RR0001) and the only national organization dedicated to supporting people with osteogenesis imperfecta (OI) and their families. Originally founded in 1972 by families in British Columbia, the society was dormant for several decades before being reactivated in 2018 at the request of Shriners Hospital for Children - Montreal and under the advocacy of Dr. Francis Glorieux. COIS is headquartered at PO Box 38189, 550 Eglinton Ave W., Toronto, Ontario, and operates across Canada through a bilingual (English/French) website, regional hubs, and community programming.

COIS delivers a defined portfolio of programs rather than commercial products: the Dr. Francis Glorieux Research Fellowship (1-2 year grants to OI researchers), the Adult Health Toolkit and New Diagnosis Toolkit (bilingual interactive PDFs), a pan-Canadian Clinical Directory of OI-specialized physicians, recurring educational webinars, and Camp OI CAN, an annual recreational camp for children with OI. The underlying technology stack is a Squarespace-hosted website, email newsletter, and webinar delivery, with no proprietary software or AI/ML components disclosed. International research participation extends through partnerships with the Brittle Bone Disorders Consortium, PCORI, and Project ECHO.

The business model is a donation-funded non-profit: COIS issues tax receipts for donations over $20, runs an annual charity golf tournament, and supports fundraising through community events, a donor wall, and direct online giving. There is no product or service revenue, no pricing model, and no enterprise customers; the go-to-market is community-led, with awareness, donor acquisition, and patient outreach handled through the website, newsletters, social channels, webinars, and partnerships with medical institutions and the U.S.-based Osteogenesis Imperfecta Foundation (OIF). The board is volunteer-led and includes medical, finance, and advocacy representatives, with S. Jacinta Whyte serving as President & Chair.

Name

Canadian Osteogenesis Imperfecta Society

Legal name

Canadian Osteogenesis Imperfecta Society

Website

https://cois-scoi.ca

Company type

Private

Founded year

1972

Operating status

Operating

Headcount range

1–10 employees

Short description

COIS is the only national Canadian charity dedicated to people with osteogenesis imperfecta (OI) and their families, delivering educational toolkits, a physician directory, research fellowships, and community programs funded entirely by donations.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Support

NAICS

Educational Services (611), Educational Support Services (611710), Educational Support Services (61171), Services for the Elderly and Persons with Disabilities (62412)

SIC

Services-Educational Services (8200), Services-Membership Organizations (8600), Services-Social Services (8300)

akta.pro primary industry

Self-Advocacy & Self-Determination Training (EDAKANAI)

akta.pro secondary industries

Independent Living Skills Training (ADLs/IADLs) (EDAKANAG), Special Needs Skill-Building & Therapy Learning Apps (Autism, OT/PT, Life Skills) (EDAFAKAJ)

Keywords

• Patient advocacy services
• Rare disease support
• Medical research fellowship
• Community health resources
• Patient education toolkits

Headquarters

HQ city

Toronto

HQ country

Canada

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Charitable Donations: COIS operates as a registered Canadian charity (CRA #11883 4928 RR0001) funded primarily through donations from individuals, families, and supporters. All donations over $20 receive a tax receipt.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels6 records

Core offering

The Canadian Osteogenesis Imperfecta Society (COIS) is a registered Canadian charity that supports Canadians affected by osteogenesis imperfecta (OI) through education, community building, and research funding. It provides educational toolkits, a clinical directory of OI-specialized physicians across Canada, webinars, an annual children's camp (Camp OI CAN), and funds OI research through the Dr. Francis Glorieux Research Fellowship.

Product overview

The Canadian Osteogenesis Imperfecta Society (COIS) is a nonprofit organization that provides support, education, and research funding for the OI community in Canada. The organization offers a suite of programs including the Dr. Francis Glorieux Research Fellowship for medical researchers, educational resources such as the Adult Health Toolkit and New Diagnosis Toolkit, a Clinical Directory connecting patients with OI-specialized physicians across Canada, Camp OI CAN for recreational support, and webinars for ongoing education. COIS operates as a membership-based charity partnered with international OI organizations including the Osteogenesis Imperfecta Foundation (OIF) and OIFE.

Differentiator

Problem solved

Functional benefit

Brands

• Dr. Francis Glorieux Research Fellowship: A research fellowship program honoring Dr. Francis Glorieux's lifetime work and achievements in OI treatment and care. The fellowship provides opportunities for medical researchers to further OI research.

Products and services

• Dr. Francis Glorieux Research Fellowship A research fellowship program named in honor of Dr. Francis Glorieux that supports medical researchers studying osteogenesis imperfecta. Fellowships are awarded for one- or two-year periods to candidates whose research offers potentially critical contributions to OI research and treatment.
• Adult Health Toolkit Educational toolkit provided as an interactive PDF to help adults with osteogenesis imperfecta manage their health. Available in both English and French.
• New Diagnosis Toolkit Educational toolkit designed to support families and individuals who have received a new osteogenesis imperfecta diagnosis, providing guidance and resources for navigating the condition.
• Clinical Directory A searchable directory of medical clinics and physicians across Canada who specialize in treating patients with osteogenesis imperfecta, organized by province.
• Camp OI CAN An annual camp program for children and young people with osteogenesis imperfecta held in Canada, providing recreational activities and peer support for the OI community.
• Webinars Online educational presentations covering topics related to osteogenesis imperfecta research, treatment, and management for patients, families, and healthcare providers.

Segments2 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eight partnerships are on record, tiered core and minor.

• Osteogenesis Imperfecta Foundation (OIF)coreStrategic or Co-development Partner · 1 January 2018COIS has been a proud partner of OIF since 2018. COIS benefits from OIF's research and resources and uses OIF's information and publications. OIF is the American Osteogenesis Imperfecta Foundation celebrating 50 years of service in 2020.
• Shriners Hospital for Children - MontrealcoreStrategic or Co-development PartnerShriners Hospital in Montreal is one of the most critical OI research centers in the world. Under Dr. Francis Glorieux's leadership, Canada became a renowned global center of excellence for OI. The hospital invited COIS to reactivate in 2018.
• Osteogenesis Imperfecta Federation Europe (OIFE)minorStrategic or Co-development PartnerCOIS participates in OIFE as part of building a global OI community network.
• British Bone Society (BBS)minorStrategic or Co-development PartnerCOIS participates with BBS as part of international OI community collaboration.
• Canadian Organization for Rare DisordersminorStrategic or Co-development PartnerCOIS is a proud member of the Canadian Organization for Rare Disorders (CORD).
• Brittle Bone Disorders Consortium (BBDC)minorStrategic or Co-development PartnerCOIS participates in international research programs including the Brittle Bone Disorders Consortium, a group of physicians, researchers, and educators focused on learning more about OI and developing new treatments.
• Patient Centered Outcomes Research Institute (PCORI)minorStrategic or Co-development PartnerPCORI funds studies that help patients and caregivers make better-informed healthcare choices. COIS participates in these international research programs.
• Project ECHO (Extension for Community Healthcare Outcomes)minorStrategic or Co-development PartnerCOIS participates in the OI TeleECHO Clinic Series, a partnership with Project ECHO aimed at building capacity to safely and effectively diagnose and treat OI.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Osteogenesis Imperfecta Federation Europe (OIFE): The pan-European umbrella for national OI patient organizations. COIS is an active OIFE participant; OIFE is directly comparable in coordinating a multinational OI patient voice, organizing international meetings and supporting national member societies.
• Osteogenesis Imperfecta Foundation (OIF): The US national OI patient advocacy organization, founded over 50 years ago. COIS partners directly with OIF and reuses its publications, making OIF the most directly comparable peer in mission, programs (toolkits, conferences, research funding) and beneficiary population.
• Muscular Dystrophy Canada: A Canadian national charity serving people with neuromuscular disorders, including rare genetic conditions similar to OI. Highly comparable in mission, Canadian-only scope, donation-funded model, equipment/funding programs, research grants and community-based service delivery.
• Little People of Canada: A Canadian support and advocacy organization for people with dwarfism and skeletal dysplasias, populations that clinically overlap with severe OI. Comparable in offering peer support, medical navigation resources and community events for Canadians with rare skeletal conditions.

Emerging players

• Brittle Bone Disorders Consortium (BBDC): A consortium of physicians, researchers and educators advancing OI research and treatment. BBDC is comparable because COIS participates in its research programs and is positioned at the intersection of patient advocacy and clinical research, similar to how BBDC sits at the intersection of research and clinical care.
• Rare Bone Disease Alliance: A US-based alliance of rare bone-disease patient and clinical organizations (co-chaired by OIF's CEO Tracy Hart, who also sits on COIS's board). Directly comparable as a cross-disease collaborative operating at the intersection of OI patient advocacy, clinician education and research prioritization.

Broad incumbents

• Children's Miracle Network (Canada): A Canadian fundraising organization supporting pediatric specialty care, including rare bone disorders. Comparable as a charity operating in the same Canadian pediatric rare-disease donor and hospital-partner ecosystem, though with a much broader mandate.
• Canadian Organization for Rare Disorders (CORD): Canada's national umbrella for rare-disease patient organizations. COIS is a member of CORD; CORD is comparable as a higher-level rare-disease advocacy and policy organization that shares COIS's patient-advocacy, education and policy-engagement orientation but operates across many rare diseases.
• Shriners Hospitals for Children – Canada (Montreal): The Montreal Shriners Hospital is a global OI center of excellence under Dr. Francis Glorieux and the catalyst for COIS's 2018 reactivation. It is comparable as the clinical-research counterpart to COIS's patient-advocacy mission and the source of much of COIS's medical credibility.

Regional players

• British Bone Society: A UK-based bone-research and clinical society with which COIS collaborates internationally. Comparable as a regional bone-disorder organization whose remit overlaps with OI clinical guidance, professional education and research collaboration.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat3 records

Key risks6 records

Key highlights6 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Profiles9 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Canadian Osteogenesis Imperfecta Society