PBC Foundation

What PBC Foundation does

The PBC Foundation is a UK-registered non-profit patient advocacy organization that supports individuals affected by Primary Biliary Cholangitis (PBC), a lifelong autoimmune liver condition. Founded in 1996 and headquartered in Edinburgh (with operations anchored in Dunfermline), the foundation delivers free educational resources, peer support, and advocacy services to a global audience. Its reach is enabled by a multilingual website supporting nine languages (English, Simplified Chinese, Japanese, Portuguese, Spanish, French, German, and Italian), a digital member portal, and an event calendar spanning in-person UK community cafés, weekly online sessions ('Choose Me Tuesday'), and an annual International PBC Summit.

Its service portfolio is organized around three pillars: information dissemination (a Resource Library of FAQs, publications, and 'What We Do' content), community connection (in-person and virtual community cafés, roadshows, patient stories), and research engagement (patient surveys including a PBC Foundation Services Survey, clinical trials information, and Project 90:90, which targets 90% of PBC patients receiving 90% of recommended care). A dedicated Clinicians' Area supports healthcare professionals, with Q&A sessions featuring named specialists such as Dr. Andreas Kremer and Prof. David Jones. There is no proprietary technology stack beyond a multilingual WordPress-based website, member login system, and standard virtual event platforms.

The foundation operates on a donations-and-fundraising revenue model, providing all services free of charge to patients, caregivers, and clinicians. Its go-to-market approach is community-led and event-driven, relying on a volunteer network for outreach, individual and corporate donations, and strategic partnerships with pharmaceutical companies — most visibly Gilead Sciences, which sponsors the 'You Are Not Alone' roadshow and co-develops patient-centered research on itch in PBC. Patient/caregiver support is delivered through a hybrid digital-plus-physical distribution model spanning local UK community cafés (Wiltshire, Fife, Suffolk, Lanarkshire) and global virtual programming.

Name

PBC Foundation

Legal name

PBC Foundation

Website

https://pbcfoundation.org.uk

Company type

Private

Founded year

1996

Operating status

Operating

Headcount range

1–10 employees

Short description

The PBC Foundation is a UK-based non-profit founded in 1996 that provides free education, peer support, and advocacy to people affected by Primary Biliary Cholangitis, a rare autoimmune liver condition, serving a global patient and caregiver audience through multilingual resources, community programs, and pharmaceutical research partnerships.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Support Services

NAICS

Voluntary Health Organizations (813212), Grantmaking and Giving Services (81321)

SIC

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

akta.pro primary industry

Community Health & Prevention Program Funding (HLAJALAF)

Keywords

• Patient support services
• Rare disease advocacy
• Health education resources
• Nonprofit community programs
• Patient community engagement

Headquarters

HQ city

Dunfermline

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The organization relies on voluntary donations from patients, caregivers, and supporters. They operate fundraising campaigns including the '30 for 30' campaign celebrating 30 years of operation. Donations can be made through their website.

Go-to-market motion2 records

Distribution channels5 records

Marketing channels6 records

Core offering

PBC Foundation is a nonprofit patient support organization that provides free educational resources, community connection, advocacy, and research engagement for people affected by Primary Biliary Cholangitis (PBC). Its core offerings include a multilingual Resource Library, Community Cafés (virtual and in-person), patient surveys, clinical trial information access, the annual International PBC Summit, and targeted programs such as Project 90:90 and the 30 for 30 anniversary campaign.

Product overview

The PBC Foundation is a patient support organization for Primary Biliary Cholangitis (PBC), a lifelong autoimmune liver condition. The organization offers a portfolio of support services including a Resource Library with educational materials, Community Cafés (virtual and in-person gatherings), Surveys for patient research input, and Clinical Trials information. Key programs include the International PBC Summit (annual conference), Project 90:90 (aiming for 90% of patients to receive 90% of recommended care), the 30 for 30 campaign celebrating 30 years of the foundation, and the PBC Foundation Roadshow bringing support closer to patients. Additional offerings include Patient Stories, Q&A sessions with medical experts, Choose Me Tuesday weekly online events, and fundraising/volunteering opportunities.

Differentiator

Problem solved

Functional benefit

Products and services

• Support Services Comprehensive support services for people living with Primary Biliary Cholangitis, including information, guidance, and community connection.
• Resource Library Educational materials, publications, and resources about PBC for patients, families, and healthcare professionals.
• Community Cafés Virtual and in-person community gatherings designed to reduce isolation and bring people affected by PBC together for mutual support.
• Surveys Patient surveys and research initiatives including the PBC Foundation Services Survey and itch-related surveys conducted in collaboration with partners like Gilead.
• Clinical Trials Information Information and access to clinical trials for patients interested in participating in medical research.
• Patient Stories Personal narratives and experiences shared by patients living with PBC to provide hope and connection.
• International PBC Summit Annual international summit bringing together patients, healthcare professionals, and researchers to share knowledge and advance PBC care.
• Project 90:90 Campaign with ambition that 90% of PBC patients receive 90% of recommended care, including videos and resources for better patient outcomes.
• 30 for 30 Campaign Campaign celebrating 30 years of the PBC Foundation, launched to mark the organization's milestone anniversary.
• PBC Foundation Roadshow Mobile educational events bringing information, support and community closer to patients, with events like 'You Are Not Alone' supported by Gilead Sciences.
• Q&A Sessions Live question and answer sessions with medical experts including Dr. Andreas Kremer and Prof. David Jones.
• Choose Me Tuesday Weekly online community event held every Tuesday 6-7pm UK time for peer support.
• Newly Diagnosed Support Dedicated resources and guidance to support individuals newly diagnosed with Primary Biliary Cholangitis, including what to expect, key questions for clinicians, and early self-care guidance.

Quantifiable outcome

• Project 90:90 aims for 90% of PBC patients receiving 90% of recommended care

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

Two partnerships are on record, tiered core.

• Gilead SciencescoreStrategic or Co-development Partner · 25 February 2026Collaboration on survey research specifically focused on itch in PBC. Gilead Sciences is a pharmaceutical company working with the foundation on patient-centered research initiatives.
• Friends of the PBC FoundationcoreOthersRelated nonprofit organization with joint statements issued on matters of shared interest. The two organizations collaborate on advocacy and awareness initiatives.

Scale indicators2 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• American Liver Foundation: US national liver disease nonprofit serving the broader liver disease community including PBC. Provides education, research funding, and advocacy at greater scale across multiple liver conditions.
• British Liver Trust: UK national charity covering all liver diseases, including PBC-related programs. Larger and broader in scope, it overlaps with PBC Foundation on patient information, advocacy, and community support for liver conditions.
• National Organization for Rare Disorders (NORD): US rare disease umbrella organization providing research grants, advocacy, and patient resources. PBC Foundation aligns with NORD's mission as a rare autoimmune condition advocate.

Direct peers

• Autoimmune Hepatitis Association: US patient association for Autoimmune Hepatitis, an autoimmune liver disease with parallel disease-tract characteristics. Operates a similar patient education and peer support model for a closely related condition.
• Children's Liver Disease Foundation: UK charity focused on childhood liver disease, with overlapping patient-support and community-engagement model. Shares the small UK charity operational structure and disease-specific advocacy orientation.
• AIH Support: UK patient-led support organization for Autoimmune Hepatitis, another autoimmune liver disease with similar patient journey characteristics. Comparable small charity model with peer support and medical Q&A offerings.
• PSC Support: UK-based patient advocacy charity for Primary Sclerosing Cholangitis, a closely related cholestatic autoimmune liver disease. Operates with the same small-team, community-cafe model and English-language support for a near-identical patient population.

Others

• Genetic Alliance UK: UK umbrella organization for rare and genetic conditions, providing shared advocacy, policy, and capacity-building services to condition-specific charities like PBC Foundation.
• EURORDIS - Rare Diseases Europe: European rare disease alliance representing patient organizations across geographies. Natural partner for PBC Foundation's European patient community and policy advocacy.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/PBCFoundation
• Facebookfacebook.com/PBCFoundation
• LinkedInlinkedin.com/company/pbc-foundation-uk-ltd

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about PBC Foundation