What PSC Partners Seeking a Cure does

PSC Partners Seeking a Cure is a 501(c)(3) non-profit patient advocacy organization founded in 2005 and headquartered in Greenwood Village, Colorado. It serves the global community affected by primary sclerosing cholangitis (PSC), a rare autoimmune bile-duct disease, by uniting patients, caregivers, hepatologists, and researchers around a shared mission of education, support, and research acceleration. The organization is led by Founder and CEO Ricky Safer and operates programs across the patient journey from newly diagnosed through transplant and post-transplant life.

Its core programs are organized as an integrated ecosystem rather than a software product portfolio. The PSC Partners Patient Registry captures de-identified data from more than 2,800 participants across 55 countries and is the foundation for WIND-PSC, a longitudinal real-world data initiative tracking disease progression. Supporting programs include a Clinical Trials information hub, a Research Grants program, an interactive Provider Map, virtual peer support via Zoom Rooms, a one-on-one Mentor Program, two newsletters, an educational webinar series, and a podcast. Community engagement is anchored by the annual national conference and, beginning in 2026, three Connected-to-Care regional summits (Los Angeles, Chicago, New York City), with the 2026 annual conference co-located with AASLD's Liver Meeting in Denver.

PSC Partners generates revenue through donations, corporate sponsorships, fundraising events, and conference/summit registrations, with scholarships available for those who cannot afford attendance. As a patient-founded organization with 20+ years of operating history and an AASLD-recognized leadership profile, the organization functions as a bridge between rare-disease patients and the hepatology research and clinical trial ecosystem, including a recent collaboration with Mirum Pharmaceuticals on the Phase 2b VISTAS trial for volixibat.

Name

PSC Partners Seeking a Cure

Legal name

PSC Partners Seeking a Cure

Website

https://pscpartners.org

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Short description

PSC Partners Seeking a Cure is a 501(c)(3) patient advocacy non-profit founded in 2005 that educates, supports, and advocates for the global PSC (primary sclerosing cholangitis) community while funding research, with programs spanning a 2,800-participant patient registry, the WIND-PSC real-world data initiative, conferences, regional summits, and grants.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133), Individual and Family Services (6241)

SIC

Services-Membership Organizations (8600), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

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

akta.pro secondary industries

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM), Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN)

Keywords

• Rare disease advocacy
• Patient support services
• Liver disease research
• Patient registry platform
• Medical research funding

Headquarters

HQ city

Greenwood Village

HQ country

United States

HQ region

North America

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: As a 501(c)(3) non-profit organization, PSC Partners Seeking a Cure generates revenue through donations from individuals, corporate sponsors, and fundraising campaigns including events.
2. Conference and Event Registration: Revenue generated from annual conference and summit registrations, though scholarships are available for those who cannot afford attendance.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels10 records

Core offering

PSC Partners Seeking a Cure is a 501(c)(3) patient advocacy non-profit that provides education, community support, and research funding for individuals affected by primary sclerosing cholangitis (PSC). Its core offerings include the PSC Partners Patient Registry (over 2,800 participants from 55 countries), the WIND-PSC real-world data initiative, an Annual Conference, regional Connected-to-Care summits, virtual support groups (Zoom Rooms), and a Research Grants Program funding scientific investigation of PSC.

Product overview

PSC Partners Seeking a Cure is a non-profit patient advocacy organization (not a software product company) offering a unified portfolio of community programs and research initiatives. The core programs include the Patient Registry (over 2,800 participants from 55 countries), WIND-PSC research initiative, and Clinical Trials hub. These are complemented by education and support programs including the Annual Conference, Connected-to-Care regional Summits, Zoom Rooms virtual support groups, and educational resources (newsletters, blogs, videos, webinars, podcasts). The organization connects patients with providers through a Provider Map and funds research through its Grants Program. The portfolio functions as an integrated ecosystem of community support, education, and research acceleration rather than a software platform.

Differentiator

Problem solved

Functional benefit

Products and services

• PSC Partners Patient Registry A patient registry collecting de-identified longitudinal information from PSC patients to accelerate research, enable clinical trials, and find effective treatments. Over 2,800 participants from 55 countries contribute data.
• WIND-PSC Real-World Data Initiative A real-world data initiative (Worldwide Integration of Natural History Data) collecting longitudinal patient data to understand the progression of primary sclerosing cholangitis and advance research understanding.
• Clinical Trials Information Hub A portal providing information about global PSC clinical trials for treatments, registries, and diagnostics, helping patients find and understand trial opportunities.
• Research Grants Program A funding program supporting novel research by leading experts in PSC, with scientific and medical advisory committees guiding research initiatives.
• Annual PSC Partners Conference The organization's annual national gathering providing education, support, and research updates for PSC patients and caregivers, featuring pediatric tracks and networking opportunities. The 2026 edition is co-located with AASLD's Liver Meeting in Denver.
• Connected-to-Care Regional Summits One-day regional educational summits bringing together PSC patients, caregivers, clinicians, and researchers to strengthen regional PSC community connections and provide localized education.
• Zoom Rooms Virtual Support Groups Virtual peer-led support groups providing safe, confidential online spaces for PSC patients, caregivers, and families to connect with others who understand their journey.
• Provider Map An interactive provider map helping PSC patients find clinicians, specialists, and healthcare facilities experienced in managing primary sclerosing cholangitis near their location.
• PSC Partners Mentor Program A one-to-one mentor program connecting caregivers and teens living with PSC with experienced peer mentors for personalized guidance and emotional support.

Quantifiable outcome

• First successful late-stage clinical trial in the U.S. for PSC treatments (Volixibat VISTAS study)
• +1 more outcomes

Named customers3 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

Feature2 records

Partnerships

Four partnerships are on record, tiered core and minor.

• AASLD (American Association for the Study of Liver Diseases)coreStrategic or Co-development Partner · 5 November 2026PSC Partners has partnered with AASLD to co-locate its 22nd Annual Conference with The Liver Meeting in Denver, November 2026. This partnership provides PSC patients and caregivers access to world-renowned liver research presentations and direct interaction with hepatologists. AASLD is hosting 11 patient and caregiver sessions at the conference.
• Mirum PharmaceuticalscoreStrategic or Co-development Partner · 4 May 2026PSC Partners collaborated with Mirum Pharmaceuticals on the Phase 2b VISTAS clinical trial for volixibat to treat pruritus (itch) in PSC patients. This represents the first successful late-stage clinical trial in the U.S. for new PSC treatments. Founder Ricky Safer was quoted in Mirum's press release about the results.
• Ken Hollander Scholarship FundminorOthersProvides travel scholarships to individuals who would otherwise be unable to attend the annual PSC Partners conference.
• Edna FoundationminorOthersCo-funds travel scholarships for conference attendees in partnership with the Ken Hollander Scholarship Fund.

Scale indicators4 records

Recent moves5 records

Expansion highlights5 records

Direct peers

• PSC Support (UK): PSC Support is the leading UK-based patient organization specifically serving people with PSC. It operates a comparable model — patient community, information resources, research engagement, and advocacy — and is the closest geographic peer to PSC Partners, serving many of the same international patients.
• Alagille Syndrome Alliance: Alagille Syndrome Alliance is a rare liver disease patient organization running patient registry, family support, research grants, and annual conference programming. It targets a comparably small rare-disease population with the same donation-funded advocacy model.
• PBC Foundation: PBC Foundation supports patients with Primary Biliary Cholangitis, a closely related autoimmune cholestatic liver disease. It is the most direct functional analogue to PSC Partners — disease-specific patient registry, advocacy, research funding, and community programming — making its operating model a near-direct comparison.
• Cholangiocarcinoma Foundation: Cholangiocarcinoma Foundation serves patients with bile-duct cancer, a disease anatomically adjacent to PSC. It runs a comparable patient registry, research grants, annual conference, and pharma-partnered clinical trial pipeline — making its structure and revenue mix highly comparable to PSC Partners.

Broad incumbents

• National Organization for Rare Disorders (NORD): NORD is the umbrella advocacy organization for all rare diseases in the U.S., providing patient advocacy, research grants, and policy work. PSC Partners is a member of NORD's ecosystem and competes with it for rare-disease philanthropic dollars and federal research funding priorities.
• American Liver Foundation: American Liver Foundation is the largest U.S. liver-disease nonprofit, with national reach, research grants, patient education, and fundraising scale that dwarfs PSC Partners. It is a key competitor for general liver-disease donations and broader awareness.
• Global Liver Institute: Global Liver Institute is a broader liver-disease advocacy organization running programs that overlap with PSC Partners' mission (Liver Cancers, Pediatric Liver Disease, rare liver disease). It is a more generalist incumbent competing for the same donor and policy-attention pool.

Others

• Global Genes: Global Genes is a rare-disease advocacy and education alliance supporting more than 700 patient organizations including PSC Partners. It is an ecosystem partner and indirect peer — competing for some of the same corporate sponsors, while also providing resources and toolkits used by disease-specific groups.

Regional players

• PSC Forum Canada: PSC Forum Canada is a Canadian PSC patient advocacy group providing peer support, education, and research engagement. It operates as a regional counterpart to PSC Partners, serving patients in a geography where PSC Partners has limited direct programming.

Emerging players

• Autoimmune Hepatitis Association: The Autoimmune Hepatitis Association serves patients with another autoimmune liver disease that frequently overlaps with PSC. It operates with a smaller scope but uses an analogous model of patient education, advocacy, and research engagement.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/user/PartnersSeekingaCure
• Facebookfacebook.com/PscPartnersSeekingACure
• LinkedInlinkedin.com/company/psc-partners-seeking-a-cure
• Instagraminstagram.com/psc.partners
• Xx.com/PSCPartners

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about PSC Partners Seeking a Cure