National MPS Society

What National MPS Society does

The National MPS Society is a US-based, 501(c)-style nonprofit patient advocacy organization founded in 1974, dedicated to curing, supporting, and advocating on behalf of individuals and families affected by mucopolysaccharidoses (MPS I, II, III, IV, VI, VII) and mucolipidosis (ML II and ML III). It serves a globally distributed rare-disease population through a multilingual website (English, Spanish, French, Chinese, Arabic, Japanese, Ukrainian), active social channels, and in-person events. Its core products and services include the Pathways Program for newly diagnosed families, Family Support Programs, Courage Pages (family storytelling platform), a Clinical Trials Database, treatment information resources covering Enzyme Replacement Therapy and Hematopoietic Stem Cell Transplantation, an Advocacy Program, an annual blog and podcast, and a newly developed patient-owned independent MPS registry launched with Sanofi support. The Society is led by President and CEO Terri Klein and COO Sharon King.

The Society's business model is donation- and grant-funded. Individual and family membership is free, with paid Professional ($75/yr) and Corporate ($1,000/yr) membership tiers for healthcare professionals and companies. Revenue streams include individual donations, an annual fund, planned giving, matching gifts, community fundraisers, Courage Page fundraisers, and corporate/pharma grants. Major programmatic expenses flow through Research Grants; in April 2026 the Society committed $4 million to an MPS IIIB gene therapy program — the largest single research commitment in its history — and in February 2026 it received an unrestricted grant from Sanofi to develop a patient-controlled MPS registry. The Society is the de facto national advocacy body for the MPS/ML community in the US and operates with a small staff (1–10 employees), board governance, and no parent company or external equity backing.

Name

National MPS Society

Legal name

National MPS Society

Website

https://mpssociety.org

Company type

Private

Founded year

1974

Operating status

Operating

Headcount range

1–10 employees

Short description

The National MPS Society is a US-based nonprofit founded in 1974 that supports families affected by mucopolysaccharidoses and mucolipidosis through education, family support programs, research grants, advocacy, and a newly launched patient registry, serving patients and caregivers across seven languages globally.

Ownership category

akta.pro rank

Headquarters

HQ city

Gaussan

HQ country

France

HQ region

Europe

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership Fees: The society offers free membership for individuals and families impacted by MPS and ML, with paid Professional ($75) and Corporate ($1000) membership tiers.
2. Donations and Fundraising: The organization raises funds through donations, annual fund campaigns, planned giving programs, matching gifts, and community fundraising events. Donations support vital programs, services, and research that improves lives and drives progress toward a cure.

Pricing tiers

Go-to-market motion2 records

Distribution channels2 records

Marketing channels7 records

Core offering

The National MPS Society is a nonprofit patient advocacy organization that supports individuals and families affected by Mucopolysaccharidoses (MPS) and Mucolipidosis (ML). It delivers direct family support through its Pathways Program for newly diagnosed families, funds scientific research via research grants, provides educational resources and treatment information (ERT and HSCT), and advocates for policy changes supporting research, healthcare access, and essential services.

Product overview

National MPS Society is a non-profit patient advocacy organization offering a unified suite of support, education, and research services for individuals and families affected by mucopolysaccharidoses (MPS) and mucolipidosis (ML). The organization provides direct support through its Pathways Program and Family Support Programs, educational resources including booklets and videos, community connection via Courage Pages and podcasts, and research funding through its Research Grants program. Additional services include a Clinical Trials Database, treatment information resources (ERT and HSCT), advocacy programs, membership, and events. The Society recently announced development of a patient-controlled independent registry in partnership with Sanofi.

Differentiator

Problem solved

Functional benefit

Products and services

• Pathways Program

Quantifiable outcome

• Patient registry development with Sanofi funding to collect real-world data for MPS and ML research

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Scale indicators3 records

Recent moves5 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): A larger umbrella advocacy organization representing all rare diseases in the US. Comparable in mission (research funding, advocacy, patient support) and nonprofit structure, but covers a much broader disease portfolio rather than focusing on a single disease area.

Regional players

• The MPS Society (UK): The UK-based sister organization serving the MPS and ML community in the United Kingdom. Directly comparable as a disease-specific MPS/ML patient advocacy organization with similar programs (family support, research funding, education), but operating primarily in the UK.
• Canadian MPS Society: Canadian national organization dedicated to MPS and ML families. Operates the same disease-specific support, education, and research funding model in Canada, making it a direct regional peer.
• National MPS Society Australia: Australian MPS/ML patient advocacy organization providing family support, education, and research funding. Direct disease-specific regional peer operating in the Asia-Pacific market.

Direct peers

• Cystic Fibrosis Foundation: A leading disease-specific nonprofit for cystic fibrosis. Closely comparable in mission (cure-focused research funding, patient support, advocacy) and nonprofit business model, and serves as a benchmark for what mature disease-specific patient advocacy can achieve.
• Muscular Dystrophy Association: Major disease-specific nonprofit covering multiple neuromuscular diseases. Comparable in operating model (research grants, family support, advocacy, fundraising events) and scale of operations, with a similarly established multi-decade history.
• ALS Association: Disease-specific nonprofit dedicated to amyotrophic lateral sclerosis. Directly comparable in structure: research funding, patient and family services, advocacy, and signature fundraising events. A relevant benchmark for an established single-disease advocacy organization.
• National Hemophilia Foundation: Disease-specific nonprofit for the bleeding disorders community. Comparable in operating model (research grants, family support, education, advocacy) and in working closely with pharmaceutical partners on treatment access.
• Parent Project Muscular Dystrophy: Parent-led disease-specific nonprofit for Duchenne muscular dystrophy. Comparable as a smaller, focused, parent-driven advocacy organization that funds research, supports families, and actively partners with biopharma on therapy development.

Emerging players

• Acid Maltase Deficiency Association: Disease-specific nonprofit for Pompe disease (a related lysosomal storage disorder). Comparable as a small, focused rare disease patient advocacy organization with overlapping research and treatment areas (ERT, gene therapy).

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/mpssociety
• YouTubeyoutube.com/@NationalMPSSociety
• Facebookfacebook.com/NationalMPSSociety
• LinkedInlinkedin.com/company/mpssociety
• Instagraminstagram.com/mpssociety

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds1 record

Investors1 record

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

M&A

Investments2 records

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

Frequently asked questions about National MPS Society