PSC PARTNERS SEEKING A CURE CANADA

What PSC PARTNERS SEEKING A CURE CANADA does

PSC Partners Seeking a Cure Canada is a Toronto-based registered Canadian charity (CRA #811905165RR0001) and the Canadian affiliate of the US nonprofit PSC Partners Seeking a Cure. Founded in 2015, the organization exists to drive research toward treatments and a cure for primary sclerosing cholangitis (PSC), a rare progressive liver disease estimated to affect more than 4,000 Canadians, while providing education and support to those affected. It serves PSC patients, caregivers and family members, Canadian hepatologists and other healthcare providers, and Canadian researchers studying PSC, and reaches its audience through a website available in English and French, social media (Facebook, Instagram, YouTube, LinkedIn), email, Zoom-based virtual support rooms, and in-person events including regional Connected-to-Care Summits and the annual Move for PSC fundraising campaign.

The organization's core "products" are programmatic rather than commercial. They include the PSC Patient Registry, where Canadian patients contribute health information for use in research and clinical trial referral; an annual Research Grants Program, which has cumulatively allocated over $900,000 CAD to competitive peer-reviewed Canadian PSC studies since the affiliate joined the US-administered grant program in 2016; Zoom Room Support Groups for peer connection across the country; a Clinical Trials Information portal; educational resources spanning initial diagnosis, living with PSC, advancing disease, liver transplant, and caregiver support; and PSC Stories, a library of patient narratives. The charity's technology stack is operational only: it uses CanadaHelps, the Charitable Impact Foundation, and PayPal Giving Fund for donation processing, Zoom and Eventbrite for virtual events, Google Analytics for web analytics, and a WordPress-based website that hosts the registry signup and resource library. There is no proprietary platform or AI/ML system operated in-house; the only AI-adjacent activity is a research grant to UHN's Toronto Centre for Liver Disease to develop a machine learning algorithm for predicting outcomes among PSC patients on transplant waitlists.

Revenue is donation-funded, not commercial. The charity raises money through individual donations (processed across multiple third-party platforms), prize draws such as the Hope for PSC airline-ticket draw, annual Move for PSC fundraising events, and donor-matching campaigns (e.g., a $20,000 matching program underwritten by the Hanna, Poletto, and Bradley families in 2025). Funds are disbursed as research grants and applied to education, patient support programs, and operational costs. The organization is governed by a Board of Directors and shares scientific review infrastructure with the US affiliate via the joint Scientific/Medical Advisory Committee.

Name

PSC PARTNERS SEEKING A CURE CANADA

Legal name

PSC Partners Seeking a Cure Canada

Website

https://pscpartners.ca

Company type

Private

Founded year

2015

Operating status

Operating

Short description

PSC Partners Seeking a Cure Canada is a Toronto-based registered Canadian charity that funds primary sclerosing cholangitis research and provides patient registry enrollment, education, clinical trial information, and peer support to the roughly 4,000 Canadians affected by this rare liver disease.

Ownership category

akta.pro rank

Product category

Patient Advocacy Nonprofit Healthcare Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (62419), Individual and Family Services (6241)

SIC

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

akta.pro industry

PRIMARYBPAGACAA

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

Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits

Keywords

• Rare disease patient advocacy
• Medical research funding
• Patient support services
• Nonprofit health charity
• Liver disease research

Headquarters

HQ city

Toronto

HQ country

Canada

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: PSC Partners Canada operates as a registered Canadian charity (CRA #811905165RR0001) that raises funds through donations, prize draws (e.g., airline ticket draws), and matching donation campaigns. Donations are processed through CanadaHelps, Charitable Impact Foundation, and PayPal Giving Fund. The organization conducts direct donation appeals and fundraising events to support its mission of funding PSC research and providing patient education and support.
2. Research Grant Funding: The organization administers a competitive annual research grant program funding PSC research. As of 2024, the Canadian affiliate has directly funded over $900,000 CAD in research grants. The organization coordinates with the US-based PSC Partners Seeking a Cure for the scientific review process administered by the Scientific/Medical Advisory Committee.

Go-to-market motion2 records

Distribution channels6 records

Marketing channels10 records

Core offering

PSC Partners Seeking a Cure Canada is a registered Canadian charity that funds PSC (primary sclerosing cholangitis) research through an annual competitive grant program and operates the PSC Patient Registry that collects health data from Canadian patients to support research. The organization also delivers free patient education resources, virtual Zoom Room support groups, clinical trials information, regional Connected-to-Care Summits, and personal story content for Canadians affected by this rare liver disease.

Product overview

PSC Partners Seeking a Cure Canada operates as a patient advocacy and research funding organization (registered Canadian charity CRA #811905165RR0001) offering a connected suite of services for Canadians affected by primary sclerosing cholangitis. The core offerings include the PSC Patient Registry for health data contribution, the Research Grants Program funding promising PSC research, Zoom Room Support Groups for peer connection, Clinical Trials Information portal, Educational Resources covering disease stages from diagnosis through transplant, and Connected-to-Care Summits for regional education. The organization also facilitates fundraising through its donation platform and connects patients with volunteer opportunities. All services are designed to drive research toward treatments and a cure for PSC while providing education and support for those impacted by this rare liver disease.

Differentiator

Problem solved

Functional benefit

Products and services

• PSC Patient Registry A patient registry where Canadians with PSC contribute their health information to help researchers better understand PSC and accelerate progress toward effective treatments and a cure. Offered free to patients and provides data access to PSC researchers.
• Research Grants Program Annual competitive research grant program that funds PSC research addressing fundamental or important clinical questions related to primary sclerosing cholangitis. Grants are awarded through a competitive peer review process administered by the Scientific/Medical Advisory Committee, with eligibility requiring CRA-prescribed institution status.
• Zoom Room Support Groups Virtual PSC Zoom Rooms that provide a space for individuals with PSC and their caregivers to connect, find support, and share experiences with others who understand the challenges of living with the disease.
• PSC Clinical Trials Information Information portal connecting those affected by PSC with cutting-edge research and clinical trials currently recruiting in Canada.
• Educational Resources Canadian-specific PSC-related resources including information on initial diagnosis, living with PSC, advancing PSC, liver transplant, caregivers and family support, and clinical guidelines.
• Connected-to-Care Summits Regional educational meetings designed to strengthen patient advocacy, clinical coordination, and research engagement for PSC, held in various locations (e.g., Chicago 2026).

Quantifiable outcome

• Over 900,000 CAD in research grants allocated by Canadian affiliate since 2016
• +1 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration6 records

Partnerships

Nine partnerships are on record, tiered core and minor.

• PSC Partners Seeking a Cure (US)coreStrategic or Co-development PartnerPSC Partners Canada is an affiliate of the US-based nonprofit PSC Partners Seeking a Cure. The organizations share a common mission to drive research for treatments and a cure for PSC. PSC Partners Canada participates in the US-administered scientific review process through the Scientific/Medical Advisory Committee. Personal information may be shared with this affiliate for mission-related services and donation acknowledgement.
• CanadaHelpscoreOthersThird-party donation processing platform used by PSC Partners Canada to process charitable donations and issue tax receipts to Canadian donors.
• Charitable Impact FoundationcoreOthersThird-party platform used by PSC Partners Canada for processing charitable donations.
• PayPal Giving FundcoreOthersThird-party platform enabling donors to make tax-deductible donations to PSC Partners Canada through PayPal.
• University Health Network (UHN) - Toronto Centre for Liver DiseasecoreStrategic or Co-development PartnerDr. Mamatha Bhat at UHN received a two-year grant totaling US$60,000 from PSC Partners Canada in 2021 to develop a machine learning algorithm optimizing outcome predictions for PSC patients on liver transplant waitlists. UHN provided patient data (144 patients) to validate the algorithm alongside the SRTR database (4,666 patients).
• Scientific/Medical Advisory Committee (SMAC)coreStrategic or Co-development PartnerThe Scientific/Medical Advisory Committee, administered by US-based PSC Partners Seeking a Cure, reviews all research grant proposals and makes funding recommendations. PSC Partners Canada participates in this scientific review process.
• UK-PSC and PSC Support (UK)minorStrategic or Co-development PartnerUK-PSC and PSC Support (UK) shared their PSC Alert Card for adaptation for Canadian PSC patients. Canadian PSC specialists reviewed the accuracy of the adapted Canadian version.
• BC TransplantminorStrategic or Co-development PartnerBC Transplant's living donor liver transplant program at Vancouver General Hospital facilitated the first living donor liver transplant in BC in nearly a decade for PSC patient David Van Ostrand. PSC Partners Canada features this story as part of awareness and education efforts.
• Canadian Association for the Study of the Liver (CASL)minorStrategic or Co-development PartnerCASL awards the PSC Partners Seeking a Cure Canada Award for the best PSC abstract presented at the Canadian Liver Meeting. PSC Partners Canada sponsors this award as part of its research engagement efforts.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• UK-PSC: UK research-focused PSC organization that partners with PSC Partners Canada on shared awareness materials. Directly comparable as a PSC-specific research and patient organization operating in a single national market.
• PSC Support: UK-based PSC patient support and advocacy organization. Shares the PSC Alert Card with PSC Partners Canada and operates a near-identical model of patient support, education, and research advocacy for the same disease.
• ALS Society of Canada: Canadian disease-specific nonprofit that funds ALS research and provides patient support — a closely analogous operating model to PSC Partners Canada, but for a different rare progressive disease. Relevant peer for benchmarking fundraising, patient registry, and research grant program design.
• Cholangiocarcinoma Foundation: US-based nonprofit focused on bile-duct cancer (cholangiocarcinoma), a disease closely related to and frequently co-occurring with PSC. Highly comparable as a disease-specific patient-advocacy and research-funding organization in the hepatobiliary space.
• PSC Partners Seeking a Cure (US): The US parent affiliate of PSC Partners Canada; runs the joint Scientific/Medical Advisory Committee and the broader research grant program that PSC Partners Canada participates in. Direct peer on mission, programs, and operational model.
• Alpha-1 Canada: Canadian nonprofit for alpha-1 antitrypsin deficiency, another rare liver/lung disease. Highly analogous operating model — small Canadian nonprofit focused on a rare disease with research grants, patient support, and registry activity.

Broad incumbents

• American Liver Foundation: US national liver-disease nonprofit providing education, support, and research funding across all liver conditions including PSC. Comparable mission scope but with significantly larger scale and broader disease focus.
• Cystic Fibrosis Canada: Major Canadian rare-disease nonprofit funding CF research and patient support. Comparable as a Canadian disease-specific research funder with an established patient registry, though at materially larger scale.
• Canadian Liver Foundation: Canada's largest liver-disease charity, funding research across all liver conditions including PSC. Comparable as a Canadian nonprofit funder of hepatology research but operates at much broader scale and competes for the same donor base.

Regional players

• Canadian Organization for Rare Disorders (CORD): Canadian umbrella organization advocating for all rare diseases. While not PSC-specific, it serves as a relevant peer for understanding the Canadian rare-disease advocacy landscape, policy engagement, and cross-disease partnership opportunities.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@pscpartnerscanada
• Facebookfacebook.com/PSCPartnersCa
• LinkedInca.linkedin.com/company/psc-partners-seeking-a-cure-canada
• Instagraminstagram.com/pscpartnerscanada

Compliance2 records

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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Frequently asked questions about PSC PARTNERS SEEKING A CURE CANADA