Society for Mucopolysaccharide Diseases

What Society for Mucopolysaccharide Diseases does

The Society for Mucopolysaccharide Diseases (MPS Society) is a UK-registered charity (Registered Charity No. 1143472 & SCO41012; Company No. 7726882) founded in 1982 and headquartered in Amersham, Buckinghamshire. It is the only registered UK charity providing professional support to individuals, families, and professionals affected by MPS, Fabry, and 27 related rare and ultra-rare life-limiting lysosomal storage diseases. The charity delivers its services free of charge through a Support and Communities Team that provides emotional, practical, and clinical-navigation assistance, including mental health support, bereavement care, school and workplace advocacy, and treatment access guidance. Major service touchpoints include MPS Awareness Week (May 11-17), Fabry Awareness Month (April), the annual MPS Matters Conference, the Weekend of Remembrance and Hope, and the Wood of Remembrance and Hope in Sherwood Forest.

The organization's service portfolio includes patient and family support, disease-specific educational resources (animations, booklets, mental health videos), awareness campaigns such as Wear it Blue, and a dedicated Professional Portal for healthcare professionals. Through its wholly-owned not-for-profit subsidiary MPS Commercial (trading as Rare Disease Research Partners - RDRP), the charity conducts clinical research and provides trial logistics services for the rare disease community, reinvesting any surplus into its mission. Strategic partnerships with BioMarin (patient advocacy), Design Science (educational content), Arts Council England (Ward 76 theatre production), and Fabry International Network (global Fabry awareness) extend its reach.

Revenue is generated through donations, regular giving, payroll giving, legacy gifts, a weekly lottery, merchandise sales, community fundraising events (TCS London Marathon, Active April, Skydive, Bake for Rare), and grant funding. All core support services are provided free of charge to beneficiaries, with some events (e.g., Weekend of Remembrance at £199 per person) carrying a partial cost-recovery fee below the actual delivery cost of £427 per person. Bob Stevens has served as Group CEO since 2017, and Christine Lavery founded the organization.

Name

Society for Mucopolysaccharide Diseases

Legal name

Society for Mucopolysaccharide Diseases

Website

https://mpssociety.org.uk

Company type

Private

Founded year

1982

Operating status

Operating

Headcount range

11–50 employees

Short description

The Society for Mucopolysaccharide Diseases (MPS Society) is the only registered UK charity providing professional support to individuals and families affected by MPS, Fabry and 27 related ultra-rare lysosomal diseases, delivering free emotional, practical and bereavement services alongside clinical trial research via its RDRP subsidiary.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Support Services

NAICS

Voluntary Health Organizations (813212), Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990)

SIC

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

akta.pro industry

PRIMARYBPAGACAM

Rare Disease & Special Needs Support Organizations

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

SECONDARYBPAGACAA

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

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

Keywords

• Lysosomal storage diseases
• Charity healthcare services
• Rare disease support services
• Patient advocacy services
• Genetic disorder support

Headquarters

HQ city

Amersham

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Others

Revenue model

1. Donations and Fundraising: The MPS Society generates revenue primarily through donations from individuals, corporate supporters, and charitable foundations. This includes one-off donations, regular monthly donations, and funds raised through community fundraising events such as the London Marathon, skydiving challenges, bake sales, and other organized activities.
2. Weekly Lucky Lottery: A weekly lottery program where participants can win prizes while supporting the charity's work.
3. Legacy Giving: The organization receives legacy gifts from supporters who leave bequests in their wills.
4. Payroll Giving: Employees can donate directly from their salary through workplace giving programs.
5. MPS Society Shop: The charity operates a shop selling merchandise to raise funds.

Pricing tiers

Go-to-market motion2 records

Distribution channels6 records

Marketing channels9 records

Core offering

The Society for Mucopolysaccharide Diseases is a UK registered charity that provides information, support, and advocacy to individuals and families affected by MPS, Fabry, and related lysosomal storage diseases, and funds research into these conditions. Through its wholly-owned subsidiary MPS Commercial (trading as Rare Disease Research Partners, RDRP), it also delivers clinical research, home-care, and industry partner services for the rare disease community.

Product overview

The MPS Society operates as a charity offering a coordinated suite of support, research, and awareness services for individuals and families affected by MPS (Mucopolysaccharide diseases), Fabry, and related lysosomal storage diseases. The organization provides direct patient and family support through its Support and Communities Team (including mental health support, bereavement services, and the Wood of Remembrance and Hope), medical research coordination, and clinical trial support. Awareness activities center on campaigns like MPS Awareness Week, Fabry Awareness Month, and Wear it Blue. Its subsidiary, Rare Disease Research Partners (RDRP), conducts research projects and clinical trial logistics. The charity also provides educational resources including disease animations, mental health videos, and professional education tools. Fundraising events and publications round out the service portfolio.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient and Family Support Services Direct support, advocacy, and care coordination for individuals and families affected by MPS, Fabry, and related lysosomal storage diseases in the UK.
• Disease-Specific Information and Publications Authoritative information resources, guides, and educational materials on MPS, Fabry, and related lysosomal storage diseases for patients, families, clinicians, and the wider public.
• Research Funding Programme Grant funding for biomedical and clinical research into MPS, Fabry, and related lysosomal storage diseases.
• Rare Disease Research Partners (RDRP) Clinical Research Services Clinical trial support, home-based nursing visits, and patient recruitment services for pharmaceutical and biotech sponsors running rare disease studies, delivered via the wholly-owned trading subsidiary MPS Commercial.
• Charity Membership Membership programme for individuals affected by MPS, Fabry and related lysosomal diseases, their families, and supporters, providing access to community, updates, and tailored support.

Quantifiable outcome

• The charity's support enabled families to navigate complex diagnoses and treatment decisions, with reported improvements in emotional wellbeing and sense of community connection.
• +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

Seven partnerships are on record, tiered core, supporting and minor.

• BioMarincoreStrategic or Co-development PartnerBioMarin is a biotechnology company developing treatments for rare diseases. The MPS Society works with BioMarin on patient advocacy and awareness. Archie Eaton, an MPS IVA patient, shared his story at the BioMarin Conference in Paris (January 2026), discussing his experience with Vimizim treatment. The partnership supports awareness and ensures patient voices are included in industry discussions about rare disease treatments.
• Rare Disease Research Partners (RDRP)coreStrategic or Co-development PartnerRDRP is a wholly-owned, not-for-profit subsidiary of the MPS Society. Its social objectives are to reinvest any surplus to support the mission of the MPS Society to transform lives through specialist knowledge, support, advocacy and research. RDRP conducts clinical research and trial logistics support for the rare disease community.
• Design SciencesupportingTechnology or IntegrationDesign Science created a series of educational animations about Fabry disease and other lysosomal conditions for the MPS Society. These animations help patients and families understand complex medical information about their conditions in accessible visual format.
• Arts Council EnglandsupportingStrategic or Co-development PartnerArts Council England provided funding for the Ward 76 theatre production, a play inspired by Sam's experiences living with ML III (Mucolipidosis Type III). The production aims to raise awareness of rare conditions and was developed through research and development phases.
• Simply Sensory TrainingsupportingTechnology or IntegrationHelen and Julie at Simply Sensory Training created sensory Christmas video activities for MPS Society families to use with children during the holiday season. Seven different activity videos were produced.
• Fairytale FarmminorStrategic or Co-development PartnerFamily-friendly venue that hosted an MPS Society family day event, providing accessible activities for families affected by MPS and related conditions.
• Fabry International NetworkcoreStrategic or Co-development PartnerInternational organization coordinating Fabry disease awareness and support. Hosted the 'Fabry Females: Your Voices - Our Insights' webinar featuring Dr Hopkin, sharing findings from a global survey of women living with Fabry disease.

Scale indicators4 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• National MPS Society (US): The US counterpart charity supporting individuals and families affected by MPS and related diseases. Closely comparable in mission, condition coverage, support services, and family-advocacy programs, differing only by geography.
• Canadian Society for Mucopolysaccharide and Related Diseases (Canadian MPS Society): Canadian national charity providing support, education and research advocacy for MPS and related lysosomal diseases. Near-identical mission, condition portfolio, and family-support model to MPS Society UK.
• Niemann-Pick UK: UK-based charity supporting families affected by Niemann-Pick disease, another ultra-rare lysosomal storage disorder. Highly comparable in operating model: small UK charity, family support, research funding, and clinical-trial advocacy.
• Batten Disease Family Association: UK charity supporting families affected by Batten disease, an ultra-rare neurodegenerative lysosomal condition. Directly comparable in scale, mission, family support services, and advocacy approach.
• Metabolic Support UK (formerly CLIMB): UK charity supporting individuals and families affected by inherited metabolic diseases, including several lysosomal storage conditions that overlap with MPS Society's condition portfolio. Comparable support, information, and advocacy model.

Emerging players

• Sanfilippo Children's Foundation: Focused specifically on MPS III (Sanfilippo Syndrome) — one of the conditions covered by MPS Society UK. Highly relevant peer given overlapping condition focus and similar rare-disease advocacy model, though narrower in scope.
• Fabry International Network: International umbrella organization for Fabry disease patient groups; MPS Society is an active member and partner. Comparable in Fabry-specific advocacy, awareness campaigns, and patient survey work, but operating as a coordinating body rather than a direct service charity.

Broad incumbents

• Genetic Alliance UK: UK national alliance of over 200 rare-disease patient organizations, including MPS Society. Comparable in advocacy and policy work for the rare-disease community in the UK, but operating at the umbrella level rather than serving one condition family directly.
• EURORDIS - Rare Diseases Europe: European-level umbrella for rare-disease patient organizations across Europe, including UK MPS charities. Comparable in rare-disease advocacy and policy influence, but broader geographic remit and no direct family support services.
• National Organization for Rare Disorders (NORD): US-based umbrella organization for rare-disease patient groups, with comparable advocacy, research funding, and patient-support programs across many rare conditions including lysosomal storage diseases.

Market position

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/mpssociety
• Instagraminstagram.com/mpssocietyuk
• LinkedInlinkedin.com/company/mps-society

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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

Frequently asked questions about Society for Mucopolysaccharide Diseases