Canadian MPS Society

What Canadian MPS Society does

The Canadian MPS Society (legal name: Canadian MPS Society for Mucopolysaccharaccharide & Related Diseases; Registered Charity #12903 0409 RR0001) is a federally registered Canadian non-profit, founded in 1985 and headquartered at 2 Campbell Drive, Suite 759, Uxbridge, Ontario. It is the only national organization dedicated to supporting Canadians affected by Mucopolysaccharidoses and related lysosomal storage diseases — a class of ultra-rare genetic conditions affecting roughly 1 in 25,000 Canadians. Programs include We Care and We Care Next Gen virtual support sessions, financial assistance to families, research grants, bilingual (English/French) educational resources, advocacy for newborn screening expansion, and operation of the Canadian MPS Registry (co-developed with the CHEO Research Institute and the INFORM RARE research network) to support clinical trial readiness in Canada.

Operationally, the Society is a lean, volunteer-board-governed charity led by Executive Director Kim Angel, with a small permanent team. It runs on a community-led, event-anchored operating model: annual/biennial National Family Conference (Calgary 2023, Mississauga 2025) paired with the Hearts Aglow Gala, International MPS Awareness Day on May 15, BBQ and run fundraisers, and grassroots community events. Its technology footprint is deliberately minimal — no mobile app, no public API, no proprietary software product; the principal digital channels are the mpssociety.ca website, social properties (Facebook, LinkedIn, Instagram, YouTube), email newsletter, and the Zeffy platform for zero-fee donation processing. Member services are delivered free of charge to eligible families.

Revenue is generated through tax-deductible individual donations and corporate sponsorship (the Society does not charge for core services and membership is free for eligible families). Sponsorship concentration is materially weighted toward rare-disease pharmaceutical developers operating in MPS — BioMarin, Takeda, JCR Pharmaceuticals, Homology Medicines, REGENXBIO, Ultragenyx, Sanofi, and Denali Therapeutics have all sponsored recent conferences. The macro environment is constructive: Canada's National Strategy for Drugs for Rare Diseases (up to CAD $1.5B over three years) and Quebec's rare disease policy expand the addressable funding pool for both direct services and downstream therapy access.

Name

Canadian MPS Society

Legal name

Canadian MPS Society for Mucopolysaccharaccharide & Related Diseases

Website

https://mpssociety.ca

Company type

Private

Founded year

1985

Operating status

Operating

Headcount range

1–10 employees

Short description

Canadian MPS Society is a federally registered Canadian charity that provides support, education, advocacy, financial assistance, and a national patient registry for families affected by Mucopolysaccharidoses and related lysosomal storage diseases, funded through donations, membership, and pharmaceutical sponsorship.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Support Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190), Social Assistance (624), Human Rights Organizations (813311)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Maternal, Child & Family Health Organizations (BPAGACAF)

Keywords

• Patient advocacy services
• Rare disease support
• Lysosomal storage diseases
• Newborn screening advocacy
• Patient community support

Headquarters

HQ city

Vancouver

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 Fundraising: The organization raises funds through individual donations, event-based fundraising (such as BBQs, runs, and community events), and corporate sponsorships. They use Zeffy as their fundraising platform which covers transaction fees. Donations are tax-deductible as they are a registered charity (#12903 0409 RR0001).
2. Membership Fees: The organization offers membership to families affected by MPS, providing access to exclusive resources, support programs, and community events.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

The Canadian MPS Society is a registered charity that provides patient advocacy, family support, education, and clinical trial registry services for Canadians affected by Mucopolysaccharidoses (MPS) and related lysosomal storage diseases. Core offerings include We Care virtual support sessions, the Canadian MPS Registry for clinical trial development, National Family Conferences, financial assistance for families, research grants, and advocacy for newborn screening across Canada.

Product overview

Canadian MPS Society is a patient advocacy and support organization (Registered Charity #12903 0409 RR0001) that provides support, education, and advocacy services for Canadians affected by Mucopolysaccharidoses (MPS) and related lysosomal storage diseases. The organization's primary offerings include: support programs such as We Care virtual connection sessions for families; educational resources including publications, videos, and webinars; advocacy for newborn screening and treatment access; research grant funding; annual National Family Conference events; and a Canadian MPS Registry to support clinical trials. The organization does not offer commercial technology products or software services.

Differentiator

Problem solved

Functional benefit

Products and services

• We Care Virtual Support Sessions Monthly virtual support group meetings for families affected by MPS and related lysosomal storage diseases, providing emotional support, shared experiences, and community connection. Includes We Care Next Gen youth sessions.

Quantifiable outcome

• The National Strategy for Drugs for Rare Diseases invested up to $1.5 billion over three years, potentially benefiting 9,600 people including 4,500 children

Named customers2 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

15 partnerships are on record, tiered platinum sponsor, silver sponsor, bronze sponsor, friend sponsor, core partner, minor and gold sponsor.

• BioMarinplatinum sponsorGTM or Marketing Partner · 1 January 2025Platinum sponsor of the 2025 National Family Conference & Hearts Aglow Gala. BioMarin develops treatments for rare genetic diseases including MPS.
• REGENXBIOsilver sponsorGTM or Marketing Partner · 1 January 2025Silver sponsor of the 2025 National Family Conference. REGENXBIO is developing gene therapies for MPS disorders including RGX-121 for MPS II.
• Ultragenyxbronze sponsorGTM or Marketing Partner · 1 January 2025Bronze sponsor of the 2025 conference. Ultragenyx acquired gene therapy program UX111 for MPS IIIA and develops treatments for rare diseases.
• Sanofibronze sponsorGTM or Marketing Partner · 1 January 2025Bronze sponsor of the 2025 National Family Conference. Sanofi develops treatments for rare diseases including MPS.
• Denali Therapeuticsbronze sponsorGTM or Marketing Partner · 1 January 2025Bronze sponsor of the 2025 conference. Denali is developing DNL126 for MPS IIIA Sanfilippo syndrome.
• Innomar Strategiesfriend sponsorGTM or Marketing Partner · 1 January 2025Gala sponsor for the 2025 Hearts Aglow Gala. Innomar Strategies provides consulting services.
• INFORM RARE Research Networkcore partnerStrategic or Co-development Partner · 1 January 2025Research network that co-developed the Canadian MPS Registry with the Canadian MPS Society and CHEO Research Institute.
• Dr. John J. Mitchell (Montreal Children's Hospital)core partnerStrategic or Co-development Partner · 1 January 2025Key medical expert and speaker at conferences. Specializes in treatment of MPS and orphan diseases at McGill University.
• Network for Rare Blood Disorder Organizations (NRBDO)minorStrategic or Co-development Partner · 1 January 2025Collaborated on newborn screening recommendations report with ImmUnity Canada and NRBDO for pan-Canadian approach.
• ImmUnity CanadaminorStrategic or Co-development Partner · 1 January 2025Partnered on newborn screening report examining federal government roles in equitable pan-Canadian approach.
• Takeda Pharmaceuticalsgold sponsorGTM or Marketing Partner · 1 January 2023Gold sponsor of the 2023 National Family Conference in Calgary. Takeda developed treatments for MPS II (Hunter syndrome) including Elaprase.
• JCR Pharmaceuticalsgold sponsorGTM or Marketing Partner · 1 January 2023Gold sponsor of the 2023 NFC. JCR develops enzyme replacement therapies including pabinafusp-alfa for MPS II.
• Homology Medicinesgold sponsorGTM or Marketing Partner · 1 January 2023Gold sponsor of the 2023 NFC. Homology Medicines is developing gene therapy HMI-203 for MPS II.
• SickKids Foundationgold sponsorGTM or Marketing Partner · 1 January 2023Gold sponsor of the 2023 NFC. SickKids Foundation supports research and care at Hospital for Sick Children.
• Children's Hospital of Eastern Ontario (CHEO) Research Institutecore partnerStrategic or Co-development Partner · 1 January 2023Partner in the Canadian MPS Registry development, along with INFORM RARE research network. CHEO hosts Newborn Screening Ontario.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• ImmUnity Canada: Canadian patient organization for immune deficiency and related disorders, and an explicit partner of the Canadian MPS Society on the pan-Canadian newborn screening report. Highly comparable in scope, structure, and advocacy focus within the Canadian rare-disease ecosystem.
• National MPS Society (US): US-based sister organization dedicated to MPS and related diseases, offering nearly identical programs (family support, research funding, advocacy, conferences). Most directly comparable peer — same disease focus, same patient population, and overlapping pharmaceutical sponsor relationships.
• Network for Rare Blood Disorder Organizations (NRBDO): Canadian alliance of rare blood disorder patient organizations, and an explicit collaborator with the Canadian MPS Society on the pan-Canadian newborn screening report. Directly comparable in mandate and structure within the Canadian rare-disease policy ecosystem.

Emerging players

• Cure Sanfilippo Foundation: US-based foundation focused specifically on Sanfilippo syndrome (MPS III), funding research and clinical trials. Overlaps with the Canadian MPS Society's advocacy on MPS IIIA newborn screening and clinical trial access, and is referenced indirectly through partners like Denali and Ultragenyx.
• Sanfilippo Children's Foundation (Australia): Australia-based foundation focused on Sanfilippo syndrome (MPS III), funding research and advocating for access to treatments. Comparable in disease sub-focus and emerging-player stage, but operates in a different geography and concentrates on MPS III rather than all MPS types.

Broad incumbents

• EURORDIS - Rare Diseases Europe: European umbrella organization representing rare-disease patient groups. Comparable in mission (advocacy, policy, patient support) but with a different geography (Europe) and a broad rare-disease mandate rather than an MPS focus.
• Canadian Organization for Rare Disorders (CORD): Canada's national umbrella organization for the rare disease community, advocating for policy frameworks like the National Strategy for Drugs for Rare Diseases. A broader incumbent working on overlapping policy issues (newborn screening, drug access) but covering all rare diseases rather than MPS specifically.

Others

• Lysosomal Disease Network: Research network affiliated with the Rare Diseases Clinical Research Network, focused on lysosomal storage diseases including MPS. Adjacent/ecosystem peer: an enabling research infrastructure that the Canadian MPS Society interacts with through the INFORM RARE partnership and clinical trial recruitment.

Regional players

• Society for Mucopolysaccharide Diseases (UK MPS Society): UK-based MPS patient advocacy organization providing support, advocacy, and research funding for MPS families. Comparable in mission and disease focus, but operates in a different geography (UK vs. Canada) and does not directly compete in Canadian territory.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@theCanadianMPSSociety
• Facebookfacebook.com/Canadian-MPS-Society-208787789156391
• LinkedInlinkedin.com/company/canadianmpssociety
• Instagraminstagram.com/canadian.mps.society

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 Canadian MPS Society