Sclérodermie Québec

What Sclérodermie Québec does

Sclérodermie Québec is a non-profit charitable organization founded in 1989 and headquartered in Longueuil, Quebec, that supports French-speaking scleroderma patients across Quebec and Canada. The organization delivers patient education through a comprehensive guide to symptoms, diagnoses and treatments (available in digital and printed French/English formats), a biannual magazine called Le Bulletin, topic-specific educational fact sheets developed with health specialists (including recent content on oral health), and a downloadable Medical Care Management Workbook. It also operates a network of regional peer support groups led by trained volunteer facilitators, an email newsletter, a clinical trials information portal, and the SPIN-HAND hand exercise program co-developed with the Scleroderma Patient-centered Intervention Network (SPIN).

The organization is funded primarily through voluntary donations, which function as membership, and through year-round fundraising events; the only transactional pricing signal is a C$23 shipping fee for printed guides, with digital resources provided free of charge. It maintains deep partnerships with academic and clinical research entities, including the Université de Montréal Scleroderma Research Chair (Dr. Jean-Luc Senécal), the CRCHUM immunoregulation laboratory (Dr. Marika Sarfati), the Canadian Scleroderma Research Group (GRCS, a CIHR-funded cohort of 1,400+ patients), Scleroderma Canada, and the global SPIN network led by Dr. Brett Thombs at McGill University.

Operationally, Sclérodermie Québec runs with a small team of 7 employees and a privacy officer (Diane Collard) and supports patient recruitment for clinical trials such as VITALISScEMC and a Phase II mycophenolate mofetil study at CHUM. It also engages in policy advocacy, including a recent campaign supporting faster Canadian access to sotatercept for scleroderma-associated pulmonary arterial hypertension. There is no disclosed revenue figure, no parent organization, no subsidiaries, and no commercial product line.

Name

Sclérodermie Québec

Legal name

SCLÉRODERMIE QUÉBEC

Website

https://sclerodermie.ca

Company type

Private

Founded year

1989

Operating status

Operating

Headcount range

1–10 employees

Short description

Sclérodermie Québec is a Quebec-based non-profit founded in 1989 that provides French-language education, peer support groups, and patient-advocacy resources for scleroderma patients across Canada, funded primarily through donations and fundraising events.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Support Services

NAICS

Social Advocacy Organizations (81331), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Patient advocacy services
• Rare disease support
• Patient education materials
• Peer support groups
• Health research funding

Headquarters

HQ city

Longueuil

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 Membership: The organization raises funds through donations. Membership is obtained by making a donation in the amount of one's choice. This supports the organization's mission to improve quality of life for people with scleroderma, fund research, develop educational tools, and advocate for patients.
2. Fundraising Events: The organization conducts fundraising activities and benefit events throughout the year to generate revenue for research support and patient services.

Pricing tiers

Go-to-market motion1 record

Distribution channels1 record

Marketing channels6 records

Core offering

Sclérodermie Québec is a non-profit patient support and advocacy organization that delivers scleroderma education, peer support, and research-funding services to patients primarily in Quebec and across Canada. Its core offerings include a comprehensive guide to symptoms, diagnoses and treatments, a biannual magazine (Le Bulletin), educational fact sheets, regional peer support groups, a clinical trials information portal, and support for research partnerships with institutions such as the CHUM, McGill University, and the Université de Montréal Scleroderma Research Chair.

Product overview

Sclérodermie Québec is a non-profit patient organization founded in 1989 offering a comprehensive suite of patient support resources centered around its core educational products: the Sclérodermie Comprehensive Guide (digital/print), Le Bulletin biannual magazine, and Medical Care Management Workbook. The organization provides educational sheets on various scleroderma topics, operates regional peer support groups across Quebec, maintains a clinical trials information portal, and offers newsletters for ongoing patient engagement. These resources work together to support scleroderma patients from diagnosis through ongoing disease management.

Differentiator

Problem solved

Functional benefit

Products and services

• Sclérodermie – Guide complet des symptômes, diagnostics et traitements (Comprehensive Guide to Symptoms, Diagnoses and Treatments)
• Le Bulletin
• Medical Care Management Workbook (Cahier de gestion de soins médicaux)
• Educational Sheets (Fiches éducatives)
• Scleroderma Patient Support Groups
• Newsletter (Infolettre)
• Clinical Trials Information Portal
• SPIN-HAND Program

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

Nine partnerships are on record, tiered core and minor.

• Scleroderma Patient-centered Intervention Network (SPIN)coreStrategic or Co-development PartnerSPIN is a global network of researchers, healthcare providers, and people living with scleroderma. Sclérodermie Québec works closely with SPIN to develop and test accessible patient programs that improve quality of life. SPIN is led by Dr. Brett Thombs from the Jewish General Hospital and McGill University.
• Canadian Scleroderma Research Group (GRCS)coreStrategic or Co-development PartnerA multicentric research group funded by CIHR that follows a cohort of more than 1,400 scleroderma patients across Canada. Sclérodermie Québec supports this research network financially and collaborates on patient recruitment.
• Scleroderma CanadacoreStrategic or Co-development PartnerNational scleroderma patient organization. Sclérodermie Québec works with Scleroderma Canada on advocacy, research, and patient support initiatives across Canada.
• Chaire de recherche en sclérodermie de l'Université de MontréalcoreStrategic or Co-development PartnerA joint initiative with Université de Montréal. The research chair, held by Dr. Jean-Luc Senécal, coordinates a team of 15 researchers, students, and specialized staff at the CHUM focused on autoimmune pathogenic mechanisms of scleroderma.
• Laboratoire d'immunorégulation du CRCHUMcoreStrategic or Co-development PartnerResearch laboratory directed by Dr. Marika Sarfati at the Centre de recherche du CHUM. The lab studies chronic inflammatory diseases including scleroderma, focusing on characterization and function of immune cells.
• Scleroderma & Raynaud's UK (SRUK)minorStrategic or Co-development PartnerUK-based scleroderma patient organization that collaborates with SPIN on international research and patient support initiatives.
• US Scleroderma FoundationminorStrategic or Co-development PartnerAmerican scleroderma patient organization that collaborates with SPIN on international research and patient support initiatives.
• Federation of European Scleroderma Associations (FESCA)minorStrategic or Co-development PartnerEuropean umbrella organization for scleroderma patient associations that collaborates with SPIN on international initiatives.
• Sclérodermie France (ASF)minorStrategic or Co-development PartnerFrench scleroderma patient association collaborating through SPIN network on international patient support and research.

Scale indicators2 records

Recent moves1 record

Expansion highlights4 records

Broad incumbents

• Canadian Organization for Rare Disorders (CORD): Canada's national umbrella for the rare disease community including scleroderma patients. Comparable as a larger, broader rare-disease advocacy organization that overlaps with Sclérodermie Québec's policy and patient-support mandate across all rare conditions.
• National Organization for Rare Disorders (NORD): US-based umbrella advocacy organization for the rare disease community. Comparable as a larger, more established rare disease advocacy and patient support organization operating in a related but broader category.
• Lupus Canada: Canadian patient organization supporting people with lupus, another autoimmune rheumatic disease. Comparable business model (donation-funded patient support, education, research funding, advocacy) and similar overlap in patient population with scleroderma patients who often face diagnostic ambiguity between autoimmune conditions.
• Arthritis Society of Canada: Large national charity funding research and delivering patient support across arthritis and rheumatic conditions including scleroderma. Comparable as a larger, better-resourced Canadian patient support and research charity in the same therapeutic area that may compete for donor dollars.

Direct peers

• Federation of European Scleroderma Associations (FESCA): European umbrella organization for scleroderma patient associations that collaborates with SPIN. Comparable as a scleroderma-specific advocacy and patient support network, though operating at a continental rather than national level.
• National Scleroderma Foundation: US-based scleroderma patient organization collaborating through SPIN. Highly comparable as a national disease-specific patient support and research-funding nonprofit serving the same patient population across a different geography.
• Sclérodermie France (ASF): French scleroderma patient association collaborating through SPIN. Direct peer providing French-language patient support and resources for scleroderma patients in France, highly analogous to Sclérodermie Québec's francophone mission.
• Scleroderma & Raynaud's UK (SRUK): UK-based scleroderma and Raynaud's patient organization partnering through SPIN. Direct peer in the same disease-specific patient support, education, and research funding space, serving an English-speaking population.
• Scleroderma Canada: National scleroderma patient organization with the same disease focus, providing patient support, advocacy, and research funding. Directly comparable as a peer Canadian scleroderma charity operating at the national level where Sclérodermie Québec operates at the provincial level.

Emerging players

• Pulmonary Hypertension Association of Canada: Canadian patient organization supporting people with pulmonary hypertension, a frequent complication of scleroderma that Sclérodermie Québec explicitly advocates on (sotatercent access). Comparable as a disease-specific patient advocacy nonprofit with overlapping patient populations in scleroderma-associated PH.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/scl%C3%A9rodermie-qu%C3%A9bec

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Sclérodermie Québec