What PSC Support does

PSC Support is the only UK patient organisation dedicated to improving the lives of people affected by Primary Sclerosing Cholangitis (PSC), a rare immune-mediated disease of the bile ducts. Founded in 1995 and now operating as a Charitable Incorporated Organisation (CIO, charity number 1175427), it provides information, peer support, and research funding for PSC patients and their families. Its core product is the PSC Support mobile application (iOS and Android), which allows users to track symptoms, medications, test results and appointments, generate PDF health reports for clinicians, and access a digital PSC Alert Card for cholangitis emergencies. Complementary products include physical merchandise (t-shirts, running shirts, pins), educational resources (Just Diagnosed Booklet, Clinical Trials Guide, PSC and Children Leaflet), and a Fundraising Pack.

The organisation funds PSC-specific research through its Mission 2030 initiative and directly awards early-stage research grants, including a 2024 investment that enabled Dr James Sun to secure major national funding for genetic-driver research. It collaborates with the NHS, an Expert Panel of PSC specialists, the Association of Medical Research Charities (AMRC), and an international rare liver disease network to shape care pathways and clinical guidelines. Revenue is generated entirely through voluntary charitable donations, merchandise sales, and fundraising campaigns (including match-funded initiatives such as the Big Give); no commercial revenue, subscriptions, or institutional funding streams are disclosed.

Name

PSC Support

Legal name

PSC Support

Website

https://pscsupport.org.uk

Company type

Private

Founded year

1995

Operating status

Operating

Headcount range

1–10 employees

Short description

PSC Support is the only UK patient organisation dedicated to Primary Sclerosing Cholangitis, providing information, peer support, a health-tracking mobile app, and research funding for affected patients and families.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190)

SIC

Services-Health Services (8000), Services-Social Services (8300)

akta.pro primary industry

Patient Support Programs & Device/Vaccine Vigilance (PSP/PSUR support) (HLAGALAK)

akta.pro secondary industry

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)

Keywords

• Patient advocacy services
• Rare disease support
• Medical research funding
• Patient education resources
• Chronic illness helpline

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Others

Revenue model

1. Charitable Donations: The primary revenue source relies on charitable donations from supporters to fund PSC research and operational activities. The Big Give match funding initiative demonstrated successful crowdfunding with £20,000 goals.
2. Merchandise Sales: Online shop selling PSC Support merchandise including t-shirts, running shirts, pins, and informational resources like the Just Diagnosed Booklet and Clinical Trials Guide.
3. Product Sales (e-commerce): Sale of merchandise and resources through the website shop, including cholangitis alert cards, fundraising packs, and educational materials.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels6 records

Core offering

PSC Support is the only UK patient organisation dedicated to Primary Sclerosing Cholangitis (PSC), providing high-quality patient information, helpline and community support, a mobile health-tracking app, and direct research funding through its Mission 2030 initiative. It also sells branded merchandise to support fundraising.

Product overview

PSC Support operates as a patient advocacy organization offering a suite of digital health tools and informational resources for people affected by Primary Sclerosing Cholangitis (PSC). The core product is the PSC Support App (available on iOS and Android), which provides symptom and health tracking, appointment management, medication logging, and health report generation. Supporting products include the PSC Alert Card (available as both a physical wallet card and digital app feature) for acute cholangitis emergencies, Clinical Trials Pack and Digital Clinical Trials Guide for research participation, and various educational leaflets including the Just Diagnosed Booklet, PSC and Children Leaflet, and Let's Beat PSC leaflet. The organization also offers merchandise including branded t-shirts and pins, and provides fundraising resources. All products are accessible through the main website (pscsupport.org.uk) and the integrated app platform.

Differentiator

Problem solved

Functional benefit

Products and services

• PSC Support App Mobile health tracking application for iOS and Android (iOS 11.4+ and Android 6+) that enables PSC patients to monitor symptoms, track test results, manage medications, log appointments, and share health reports with their medical team.

Quantifiable outcome

• 78% of £20,000 goal reached in 48 hours during Big Give campaign
• +1 more outcomes

Named customers1 record

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

Partnerships

Five partnerships are on record, tiered core and minor.

• Association of Medical Research Charities (AMRC)coreStrategic or Co-development PartnerPSC Support is a member of AMRC, which governs their research grant-making processes and data sharing agreements for research funding administration.
• PSC Expert PanelcoreStrategic or Co-development PartnerAn expert panel of PSC specialists that reviews information accuracy and quality for the charity, ensuring medical content meets professional standards.
• Healthcare Providers (NHS)coreStrategic or Co-development PartnerCollaboration with healthcare providers to improve clinical care and shape PSC care pathways across the NHS, including expert round-tables to design ideal care pathways.
• Scientific Review CommitteecoreStrategic or Co-development PartnerExternal peer reviewers who evaluate research funding applications to ensure scientific rigor and eligibility for PSC Support grants.
• External Peer ReviewersminorStrategic or Co-development PartnerExternal experts who review research applications for PSC Support funding.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Genetic Alliance UK: Genetic Alliance UK is a UK alliance of over 200 rare disease patient organizations, providing shared infrastructure, policy advocacy, and research collaboration. It is comparable as an umbrella organization that supports patient advocacy groups operating in rare and genetic disease spaces like PSC.
• European Association for the Study of the Liver (EASL): EASL is the leading European professional hepatology association promoting liver research, clinical guidelines, and education. It is comparable as a stakeholder that PSC Support collaborates with on research strategy and clinical consensus for liver diseases including PSC.
• Rare Disease UK: Rare Disease UK is the national campaign for people with rare diseases, advocating for policy improvements, research funding, and patient access. It is comparable as a UK advocacy organization addressing many of the same systemic challenges faced by ultra-rare disease communities.
• American Liver Foundation: American Liver Foundation is a major US liver disease nonprofit providing patient education, support, and research funding across all liver conditions. It is comparable as a broader incumbent operating in the same disease area with overlapping patient education and research funding functions.

Regional players

• Children's Liver Disease Foundation: Children's Liver Disease Foundation is a UK charity supporting children and families affected by liver disease, including pediatric PSC. It is comparable through its pediatric PSC information resources and family support services, paralleling PSC Support's PSC and Children leaflet.
• British Liver Trust: British Liver Trust is the UK's national liver disease charity, offering patient support, information, and research funding across all liver conditions including PSC. It is a UK peer operating in the same liver disease space with overlapping patient support and advocacy functions.

Others

• Association of Medical Research Charities (AMRC): AMRC is the UK membership body for medical research charities that sets standards for research funding governance. PSC Support is itself an AMRC member, making AMRC a directly relevant ecosystem enabler and peer reference point for research charity operations.
• NIHR (National Institute for Health and Care Research): NIHR is the UK's primary funder of clinical and applied health research. It is comparable as an ecosystem participant that co-funds and validates the research pipeline PSC Support's Mission 2030 initiative feeds into, including downstream national grants like Dr James Sun's.

Direct peers

• PSC Partners: PSC Partners is the leading US-based patient organization dedicated to primary sclerosing cholangitis, providing patient services, research funding, and advocacy for the same PSC community. It is the most directly comparable peer in mission, structure, and disease focus.
• PSC Forum Europe: PSC Forum Europe is a European umbrella organization representing PSC patient groups across multiple countries, coordinating advocacy, awareness, and research engagement. It is a direct peer at the supranational level in the same rare disease advocacy niche.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xtwitter.com/PSCSupport
• YouTubeyoutube.com/channel/UCwN0zX5K8dF5Z5T3E8bQ
• Facebookfacebook.com/PSCSupportUK
• LinkedInlinkedin.com/company/pscsupportuk
• Instagraminstagram.com/pscsupport
• TikToktiktok.com/@pscsupport
• Pinterestpinterest.com/PSCSupport/_saved

Revenue estimate

Valuation estimate

Number of profiles

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 PSC Support