Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network

Rare Disease Patient Advocacypfic.org

Company typePrivate
Founded2018
HeadquartersStanton, United States
Headcount1–10
GTM typeB2C
OfferingServices

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network firmographics

Firmographics

Name: Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network
Legal name: Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
Website: https://pfic.org
Company type: Private
Founded year: 2018
Operating status: Operating
Headcount range: 1–10 employees
Ownership category
akta.pro rank

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network industry classification

Industry

Product category: Rare Disease Patient Advocacy
NAICS: Other Individual and Family Services (624190), Individual and Family Services (6241)
SIC: Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)
akta.pro primary industry: Chronic Condition Management & Remote Monitoring (e.g., diabetes, HTN) (HLALADAD)

Keywords

Rare disease advocacy
Patient support services
Liver disease education
Patient registry services
Nonprofit health advocacy

Where Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network is headquartered

Location

Headquarters

HQ city: Stanton
HQ country: United States
HQ region: North America

Offices1 record

Markets served

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network business model

Business model

GTM type: B2C
Offering type: Services
Cost components: Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

Donations and Fundraising: The organization raises funds through individual donations, peer-to-peer fundraising campaigns, and the annual PFIC Awareness Day fundraising drive. In 2025, they raised over $93,000 during Awareness Day alone.
Event-based Fundraising: Annual charity events including the PFIC Charity Open & Labor Day Party featuring disc golf and cornhole tournaments. The 2025 event raised over $20,000.
Corporate Sponsorships: Event sponsorships from companies including Mirum Pharmaceuticals and other pharmaceutical/biotech partners supporting rare disease research.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network product offering

Product offering

Core offering

PFIC Network is a 501c3 nonprofit that provides free education, support programs, and research-advocacy resources for patients and families affected by Progressive Familial Intrahepatic Cholestasis. Its core offerings include a multilingual patient brochure library, an expert webinar series, a global PFIC Patient Registry, the IMPACT Treatment Experience App for collecting patient-reported outcomes, and the interactive PFIC Research Roadmap, supported by signature events such as PFIC Awareness Day and the annual Family & Scientific Conference.

Product overview

PFIC Network operates as a unified patient advocacy platform offering multiple interconnected programs and resources for the PFIC community. The core platform (pfic.org) serves as the central hub connecting educational resources (webinars, brochures in 19 languages, research library), community support programs (care packages, financial assistance, mental health resources), patient registry, and advocacy initiatives (Awareness Day, conferences). Key digital tools include the IMPACT Treatment Experience App for treatment data collection, the Patient Registry for research data, and the Research Roadmap for research initiatives. The organization hosts annual conferences and events that bring together the global PFIC community including patients, families, clinicians, researchers, and industry partners.

Differentiator

Problem solved

Functional benefit

Products and services

PFIC Patient Registry

Quantifiable outcome

Patient brochure available in 19 languages
+2 more outcomes

Companies that use Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network

Customer profile

Named customers1 record

Segments4 records

Ideal customer profiles3 records

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network technology and API

Technology

Technology focussed No

API detail

Has API: No
API docs
API detail

Core technology

AI maturity

App detail

Feature3 records

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network partnerships and signals

Strategic signal

Partnerships

Five partnerships are on record, tiered core and minor.

Alagilles Syndrome AlliancecoreStrategic or Co-development Partner · 1 January 2026Partner organization in the 2nd Cholestatic Liver Disease Summit (June 2027). Collaborating with PFIC Network to bring together the wider cholestatic liver disease community for a multi-day summit.
Biliary Atresia Research & EducationcoreStrategic or Co-development Partner · 1 January 2026Partner organization in the 2nd Cholestatic Liver Disease Summit (June 2027). Collaborating to create an inclusive event for the cholestatic liver disease community.
Mirum PharmaceuticalsminorOthersPharmaceutical company developing treatments for rare liver diseases. Photos on the website reference Mirum with images from their photoshoot, suggesting a partnership or sponsorship relationship.
PFIC Italia NetworkminorGTM or Marketing PartnerItalian PFIC patient advocacy network. Contributed a video message for PFIC Awareness Day 2025 featuring Dr. Richard Thompson explaining PFIC discoveries.
ALGSA (Alagille Syndrome Alliance)minorStrategic or Co-development PartnerPreviously co-hosted 2021 virtual family conference with PFIC Network, demonstrating ongoing collaborative relationship.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network competitors and assessment

Company assessment

Broad incumbents

National Organization for Rare Disorders (NORD): The largest US rare disease umbrella advocacy organization, providing patient advocacy, research support, and policy engagement across hundreds of rare conditions including PFIC. Comparable as a fellow patient advocacy nonprofit serving rare disease communities.
American Liver Foundation: Large US liver disease patient advocacy organization covering all liver conditions including rare pediatric ones. Comparable advocacy mission and education programs, though broader scope and substantially larger scale.
Global Genes: Global rare disease advocacy alliance supporting patients, researchers, and advocates across 7,000+ rare diseases. Comparable as a peer rare disease patient advocacy nonprofit with similar mission, education, and community-building programs.
EveryLife Foundation for Rare Diseases: US rare disease policy and advocacy organization focused on accelerating biotech innovation for rare diseases. Comparable as an advocacy nonprofit operating in the rare disease space with policy/regulatory engagement.
Alpha-1 Foundation: Established rare disease patient advocacy organization with mature patient registry, research grant programs, and pharma partnerships. Comparable as a model for how an ultra-rare disease advocacy org can build research infrastructure and industry relationships.

Direct peers

Biliary Atresia Research & Education (BARE): Patient advocacy organization for biliary atresia, another rare cholestatic liver disease in children. Direct peer as a co-host of the Cholestatic Liver Disease Summit with structurally similar patient population and advocacy programs.
Alagille Syndrome Alliance: Patient advocacy organization for Alagille Syndrome, a related rare cholestatic liver disease. Direct peer as a co-host of the Cholestatic Liver Disease Summit, serving a structurally similar ultra-rare pediatric liver disease community.

Others

Mirum Pharmaceuticals: Pharmaceutical company developing treatments for rare liver diseases including PFIC (maralixibat). Not a peer but a key sponsor/partner; comparable because it represents the pharma side of the PFIC ecosystem the org serves.

Regional players

Children's Liver Disease Foundation: UK-based charity supporting children with all forms of liver disease. Comparable as a pediatric liver disease advocacy nonprofit with overlapping mission of family support, education, and research, though operating in different geography.
PFIC Italia Network: Italian PFIC patient advocacy network collaborating with PFIC Network for Awareness Day. Most directly comparable peer given identical disease focus, though operating in different European geography.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network financial estimates

Financial estimate

Revenue estimate

Valuation estimate

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network leadership team

Management profile

Number of profiles

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network funding detail

Funding detail

Funding overview

Funding rounds

Investors

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

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network M&A and investment

M&A and investment

M&A

Investments

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

Frequently asked questions about Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network

What does Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network do?

Is Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network a public or private company?

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network is a private company. It is classified as nonprofit foundation owned and is currently operating.

When was Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network founded?

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network was founded in 2018. It employs 1 to 10 people.

Where is Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network based?

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network is headquartered in Stanton, United States, in the North America region.

How does Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network make money?

Three revenue lines are on record. Donations and Fundraising is the primary driver. The others are event-based Fundraising and corporate Sponsorships.

Who are Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network's main competitors?

Broad incumbents on record are National Organization for Rare Disorders (NORD), American Liver Foundation, Global Genes, EveryLife Foundation for Rare Diseases and Alpha-1 Foundation. Direct peers are Biliary Atresia Research & Education (BARE) and Alagille Syndrome Alliance. Mirum Pharmaceuticals is listed as an others. Regional players are Children's Liver Disease Foundation and PFIC Italia Network.

Does Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network have an API?

No public API is recorded for Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network.

What industry is Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network in?

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is HLALADAD, Chronic Condition Management & Remote Monitoring (e.g., diabetes, HTN). Its NAICS code is 624190 and its SIC code is 8300.