Sjögren's Society of Canada

What Sjögren's Society of Canada does

The Sjögren's Society of Canada is a federally registered Canadian nonprofit charitable organization (Registered Charity number 81858 8956 RR0001) founded in 2006 and incorporated as a nonprofit in November 2008, headquartered in Paris, Ontario. The society serves the estimated 1% of Canadians (approximately 430,000 people) affected by Sjögren's disease — a chronic systemic autoimmune disease — of whom 90% are women typically between ages 35–65. Its mission centers on patient education, peer support, disease awareness, advocacy for medication access, and funding of Sjögren's-related research in Canada.

The society delivers value through a portfolio of member and community-facing programs: an annual membership program ($40 CAD for Canadians, $45 USD for US residents, $50 for healthcare professionals) granting access to specialist referral lists, educational materials, monthly eNewsletters, and quarterly Connections newsletters; a national network of volunteer-led support groups across Ontario, Manitoba, Saskatchewan, and Quebec; the annual National Patient Conference (19th edition scheduled for 2026); quarterly Members Only Virtual Town Halls with expert guest speakers; the annual National Walk for Sjögren's fundraising campaign; an educational blog; curated research report summaries; patient survival tips; anti-inflammatory recipe collections; and patient story testimonials. The organization operates without disclosed paid staff, relying entirely on volunteers and a Managing Director.

The society is funded through a combination of individual membership fees, tax-deductible donations (facilitated through CanadaHelps), corporate sponsorships from pharmaceutical and healthcare businesses, and conference/event revenue. Its sole technology infrastructure is a website and member portal hosted via Firespring; there is no proprietary technology product. Strategic activity centers on regulatory advocacy with Health Canada (notably the 2022 campaign against the non-approval of cevimeline/Sholyne) and partnerships with pharmaceutical companies developing Sjögren's therapeutics.

Name

Sjögren's Society of Canada

Legal name

Sjögren's Society of Canada/Société de Sjögren's du Canada

Website

https://sjogrenscanada.org

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

1–10 employees

Short description

Sjögren's Society of Canada is a federally registered Canadian nonprofit, founded in 2006, that provides education, peer support groups, awareness campaigns, and research funding for the estimated 430,000 Canadians living with Sjögren's disease, funded through memberships, donations, and corporate sponsorship.

Ownership category

akta.pro rank

Product category

Patient Advocacy Nonprofit Services

NAICS

Voluntary Health Organizations (813212), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

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 support services
• Autoimmune disease education
• Nonprofit health advocacy
• Chronic illness support
• Medical research fundraising

Headquarters

HQ city

Paris

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. Membership Fees: Annual membership fees providing access to support groups, specialist lists, newsletters, educational brochures, conferences, and member-exclusive town halls. Membership fees are $40 CAD for Canadians, $45 USD for US members, and $50 for healthcare professionals.
2. Donations: Tax-deductible donations to the registered charity (81858 8956 RR0001). Giving Tuesday campaigns have raised $6,700 (2024) and $6,092 (2023) with matching donors. Year-end giving campaigns with matching up to $10,000.
3. Corporate Sponsorship: Corporate sponsorship from pharmaceutical companies and healthcare businesses for events including the National Patient Conference, Townhall presentations, regional Walks, and newsletter advertising.
4. Conference and Event Revenue: Revenue from National Patient Conference registrations with member discounts, and merchandise/sales at events.

Pricing tiers

Go-to-market motion3 records

Distribution channels6 records

Marketing channels12 records

Core offering

Sjögren's Society of Canada is a federally registered Canadian charity that supports, educates, and advocates for people affected by Sjögren's disease through an annual membership program, local volunteer-led support groups, the annual National Patient Conference, quarterly Members Only Virtual Town Halls, and educational resources including research reports, blog articles, survival tips, recipes, and patient stories. It also raises funds for Sjögren's-related research and pursues advocacy related to patient access to medications.

Product overview

Sjögren's Society of Canada operates as a nonprofit patient advocacy organization rather than a traditional product company. Its core offerings consist of a membership program ($40-$50 CAD annually) providing access to support groups, specialist lists, educational newsletters, and virtual town halls; the annual National Patient Conference featuring expert presentations; and the National Walk for Sjögren's fundraising events. Additional services include an educational blog, curated recipe collection, patient survival tips, research report summaries, and patient story testimonials. The organization connects patients to local support groups across Canada and provides educational brochures and resources.

Differentiator

Problem solved

Functional benefit

Products and services

• SjSC Membership Program Annual membership program ($40 CAD for Canadians, $45 USD for US members, $50 for healthcare professionals) granting access to support networks, specialist referral lists, newsletters, virtual town halls, educational materials, and discounts on conferences and resources for Sjögren's patients, caregivers, and healthcare professionals.
• Annual National Patient Conference Annual educational conference featuring expert presentations on Sjögren's diagnosis, treatment, and management, with Q&A sessions and sponsor recognition. The 19th Annual Conference (2026) covered medications, dry eye therapy, and women's health. Members receive discounts on registration.
• Members Only Virtual Town Halls Quarterly virtual presentations exclusively available to society members, featuring Sjögren's experts followed by Q&A sessions. Recordings are archived in the Member Portal for on-demand access.
• National Walk for Sjögren's Annual fundraising and awareness walk held across Canadian cities and neighborhoods, featuring expert speakers, patient testimonials, and prize opportunities for top fundraisers. Facilitated through the CanadaHelps platform.
• Support Groups Network of local volunteer-led support groups across Canada, providing patient meetings, product sharing, educational resources, and emotional support for individuals living with Sjögren's. Active groups include Cambridge, Guelph, Kitchener, London, Durham Region, Ottawa, Brantford/Paris, Manitoba, Saskatchewan, and Quebec.
• Research Reports Curated collection of summaries of Sjögren's-related research studies, including topics on AI-assisted diagnosis, clinical trials (ianalumab, dazodalibep), organ involvement, and treatment efficacy.
• Educational Blog Educational blog covering various Sjögren's topics including symptom management (fatigue, brain fog, dry eyes/mouth, pain), treatment options, lifestyle tips, and disease understanding for patients and caregivers.
• Recipe Collection Collection of Mediterranean diet-inspired, anti-inflammatory recipes specifically designed for Sjögren's patients to help manage symptoms and improve quality of life.

Quantifiable outcome

• Sjögren's affects approximately 1% of Canadians, 90% of whom are women
• +2 more outcomes

Named customers6 records

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Three partnerships are on record, tiered minor.

• Dysautonomia InternationalminorStrategic or Co-development Partner · 2 September 2026Lauren Stiles, President and co-founder of Dysautonomia International, is featured speaker at September 2026 Members Only Virtual Town Hall. Dysautonomia International is a nonprofit organization focused on autonomic disorders research and advocacy.
• NovartisminorStrategic or Co-development Partner · 8 December 2025Novartis announced two ianalumab Phase III clinical trials met primary endpoint in patients with Sjögren's Disease. The SjSC reported on this research development for members as part of their research updates.
• Kye PharmaceuticalsminorStrategic or Co-development Partner · 27 April 2022Kye Pharmaceuticals worked with SjSC since 2019 to seek Health Canada approval for cevimeline/Sholyne for treating dry mouth in Sjögren's patients. SjSC mobilized member advocacy campaigns to protest Health Canada's non-approval decision. The partnership ended unsuccessfully in 2022 when Health Canada denied approval.

Scale indicators9 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• Vasculitis Foundation Canada: Small Canadian nonprofit serving patients with vasculitis, another rare autoimmune disease. Comparable as a small-scale, volunteer-driven Canadian disease-specific patient-advocacy organization reliant on membership fees, donations, and pharmaceutical sponsorships.
• Lupus Canada: National Canadian nonprofit serving lupus patients — predominantly women with a chronic autoimmune disease — through support groups, education, advocacy, and research funding. Closely analogous disease-specific, female-skewed autoimmune patient-advocacy model in the same Canadian regulatory and fundraising environment.
• Sjögren's Foundation: The U.S. national nonprofit dedicated to Sjögren's, providing support, education, and research funding. Directly comparable mission and program mix, and historically the model from which the Sjögren's Society of Canada was seeded when founder Lee Durdon volunteered as an Ontario support group leader for the Foundation.
• Canadian Spondylitis Association: Canadian nonprofit serving patients with ankylosing spondylitis and related spondyloarthritis. Closely analogous in scale, structure, and disease focus (chronic autoimmune rheumatic condition), making it a near-direct size and model peer for benchmarking.

Broad incumbents

• Autoimmune Association: U.S.-based nonprofit (formerly AARDA) covering the broader autoimmune disease category including Sjögren's. Comparable advocacy and research-funding mission with broader scope, and a potential international-network partner for the Sjögren's Society of Canada.
• Arthritis Society of Canada: Canada's largest charity serving patients with autoimmune and inflammatory arthritis, with a national research investment program and regional offices. Comparable as a Canadian autoimmune-focused patient-advocacy nonprofit, but materially larger in scope and budget than the Sjögren's Society.
• Crohn's and Colitis Canada: Canadian nonprofit providing education, support, advocacy, and research funding for patients with IBD. Comparable as a chronic-disease-specific patient-advocacy charity in Canada with similar volunteer-driven support-group network and corporate-sponsorship model.
• Multiple Sclerosis Society of Canada: Major Canadian health nonprofit serving a chronic neurological condition with significant female prevalence. Comparable mission and structure — support, advocacy, research funding — but at much greater scale, offering a benchmark for what a fully mature national disease-specific nonprofit can become.
• Canadian Cancer Society: Canada's largest disease-focused charitable organization, with peer-support, research-funding, and advocacy programs analogous to those of the Sjögren's Society. Useful as an upper-bound benchmark for fundraising infrastructure and corporate-partnership development.

Emerging players

• Dysautonomia International: U.S.-based nonprofit focused on autonomic disorders, whose president Lauren Stiles was featured as a speaker at the Society's September 2026 town hall. Comparable as a small, patient-advocacy nonprofit with an active research-engagement agenda and overlapping chronic-illness patient population.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/SjogrensCa
• Facebookfacebook.com/SjogrensSocietyOfCanada
• Instagraminstagram.com/sjogrenscanada
• LinkedInlinkedin.com/company/sjogrens-society-of-canada

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Sjögren's Society of Canada