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Primary Biliary Cholangitis Hub

Trusted care. Latest research. Community. Everything PBC in one place.

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New Primary Biliary Cholangitis research indexed on PubMed  Β·  Recruiting trials on ClinicalTrials.gov  Β·  Find a Primary Biliary Cholangitis specialist near you  Β·  Primary Biliary Cholangitis community & caregiver support  Β·  CFRD screening reminder  Β· 
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Medical Overview of Primary Biliary Cholangitis

Sources cited

A rare autoimmune cholestatic liver disease characterized by autoimmune mediated damage of small intrahepatic bile ducts leading to cholestasis, fibrosis, and potential cirrhosis.

State of Disease · Prevalence / incidence
1-5 / 10 000 — Point prevalence · Worldwide (Validated)
Source: 22245904 — via Orphanet (orphadata.com), CC-BY 4.0 · cited, never invented.
Gene / DefectIL12RB1, SPIB, IL12A, IRF5
InheritanceMultigenic/multifactorial
Hallmark SymptomsAntimitochondrial antibody positivity, Biliary cirrhosis, Cirrhosis, Conjugated hyperbilirubinemia, Dermatographic urticaria, Hyperpigmentation of the skin, Abnormal circulating lipid concentration, Abnormality of the intrahepatic bile duct
Also known as: Hanot syndrome, PBC, Primary biliary cirrhosis
Classification & codes: GARD 0007459 · Orphanet ORPHA:186 · OMIM 109720 · ICD-10 K74.3

Sources: GARD (NIH/NCATS), Orphanet Β· last reviewed 2026. Educational only β€” not medical advice.

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News & Updates
For you
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News & Developments
Live sources
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Treatments
Current options

News & Updates

New in Primary Biliary Cholangitis research Β· 2026

ALYFTREK shows positive Phase 3 results in children ages 2–5

Vertex plans global regulatory submissions for this pediatric age group in the first half of 2026.

Real, verifiedPediatric
Source: Vertex Pharmaceuticals newsroom · linked
View article β†’
Community Discussion Β· in Parent Caregivers Β· 4 hours ago

Airway clearance routines that actually work for teens

πŸ’¬ 142 replies❀ 87 likes
Join the discussion β†’
Clinical Trial Match Β· Recommended for you

3 open trials match this profile

Locations in NC, FL and GA.

GeneticModulatorAges 12+
Source: ClinicalTrials.gov · linked
View matches β†’
Upcoming Event Β· sample

Primary Biliary Cholangitis Family Conference

Illustrative example event Β· location TBD

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Featured Education Β· Tomeko Grand Rounds

Care & management overview — Primary Biliary Cholangitis

Educational programming; see the cited sources on this hub.

Sample session · illustrative
Watch β†’

Primary Biliary Cholangitis News & Developments

The latest Primary Biliary Cholangitis research, news and registered trials — live from public sources. Each link opens the source directly; nothing here is auto-summarized or invented.

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Clinical Trials
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Plain-language Tools
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Mental Health Toolkit
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504 / IEP Checklist
For school meetings
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Research Matching
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Recruiting trials

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Loading recruiting PBC trials…Live from ClinicalTrials.gov

Find a Primary Biliary Cholangitis Specialist Near You

Sample results β€” illustrative only. A real version would search the NPPES provider registry and CFF-certified centers by actual distance from your ZIP.

Specialists Who Treat Primary Biliary Cholangitis

632
Verified specialists across the fields that manage Primary Biliary Cholangitis — genetics, nephrology, cardiology, neurology and more. Each is confirmed to prescribe an FDA-approved Primary Biliary Cholangitis therapy from public CMS records, and each links to their Tomeko listing. No patient data.
Color code: verified treater  ·  also publishes on Primary Biliary Cholangitis
Showing 6 of 632 verified specialists across these fields. See the full directory →
How we validate: confirmed treaters from public CMS prescribing records + specialty and location from the NPPES provider registry; a “Publishes on Primary Biliary Cholangitis” chip means the clinician also appears in PubMed for this condition. A public-data signal, not an endorsement — confirm any clinician is accepting patients.

Treatment & Daily Living

Medical care plus the everyday therapies and supports relevant to Primary Biliary Cholangitis. Treatment is individualized — ask your specialist about the medications, procedures and therapies. Browse medications →

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Physical therapyStrength, mobility and function.
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Occupational therapyDaily-living skills and adaptive strategies.
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Assistive technologyDevices and tools that support independence.
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Mental healthCoping support for patients and families.
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School & workAccommodations, IEP / 504 and workplace support.
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Caregiver & respiteSupport and rest for the people doing the caring.

Media Center

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News, podcasts, books & research for Primary Biliary Cholangitis — real coverage, links out, never re-hosted.

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NewsLatest coverage.
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PodcastsEpisodes & shows.
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BooksBooks & memoirs.
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ResearchNewest papers (PubMed).

Audience Guides

Plain-language guidance for the people around someone with Primary Biliary Cholangitis — how to understand it and talk about it. AI-generated for communication, not medical advice; always confirm specifics with a clinician.

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TeacherA student may need accommodations — rest breaks, bathroom access, flexible deadlines, or a place for medication. Keep the care plan handy, know the warning signs, and treat the student as capable — most want to be included, not singled out.
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CoachAsk the family what activity is safe and what to watch for. Have an emergency plan and the family's contacts on hand. Build in rest and hydration, and adapt drills so they can take part.
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Employer / managerFocus on what helps them do the job — flexible hours, remote options, accessible space, and time for appointments. Keep health details private and let them lead on what they share.
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School nurseGet the care plan and medication orders on file, know the emergency steps and who to call, and coordinate quietly with teachers so the student is supported without being singled out.
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Family & friendsLearn the basics, ask how you can help rather than assuming, and offer specific support — a meal, a ride, or just listening. Small, steady help matters more than grand gestures.

Companies Developing Treatments

live

Biopharma companies with registered trials for Primary Biliary Cholangitis — from ClinicalTrials.gov. Informational, not an endorsement, and not every program is in trials.

IndustryGilead Sciences16 registered trials for Primary Biliary Cholangitis
IndustryIntercept Pharmaceuticals12 registered trials for Primary Biliary Cholangitis
IndustryIpsen9 registered trials for Primary Biliary Cholangitis
IndustryGlaxoSmithKline7 registered trials for Primary Biliary Cholangitis
IndustryZydus Therapeutics Inc.6 registered trials for Primary Biliary Cholangitis
IndustryMirum Pharmaceuticals, Inc.5 registered trials for Primary Biliary Cholangitis
IndustryDr. Falk Pharma GmbH5 registered trials for Primary Biliary Cholangitis
IndustryNGM Biopharmaceuticals, Inc4 registered trials for Primary Biliary Cholangitis
IndustryHighTide Biopharma Pty Ltd4 registered trials for Primary Biliary Cholangitis
Full biopharma directory (ClinicalTrials.gov) →
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Questions For Your Next Visit

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Preferences only β€” saved to your account, never shared or sold. No PHI. Sources: GARD (NIH/NCATS), Orphanet.

Tools

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Primary Biliary Cholangitis Care Directoryfrom CFRI faculty

Every institution behind the faculty, with their affiliated experts.

Researchers Publishing on Primary Biliary Cholangitis

20
People who publish research on Primary Biliary Cholangitis, ordered by number of articles — a research-activity signal. This is not a directory of treating clinicians; to find a doctor who treats Primary Biliary Cholangitis near you, use the Find a Specialist Near You finder above. Each links to their Tomeko researcher profile.
Ordered by number of published articles on this condition — a public-data count from PubMed records (NIH/NLM). A signal of research activity, not a Tomeko ranking or endorsement.

Mental Health Toolkit

Sources cited

Coping strategies, how to find a a specialist therapist, and mental-health resources built for the ups and downs of living with Primary Biliary Cholangitis β€” for patients and caregivers alike.

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504 & IEP Accommodations Checklist

Print

Preferences only β€” saved to your account, never shared or sold. No PHI. Sources: GARD (NIH/NCATS), Orphanet.

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Grand Rounds
Accredited education
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Centers of Excellence
CFF network
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Nonprofits & Foundations
Who to know
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Grants & Financial Help
Cost assistance

Grand Rounds & Accredited Education

CFRI 2026 program
Primary Biliary Cholangitis Pharmaceutical Issues β€” Drug-Drug Interactions and BeyondJake Brockmeyer, PharmD
Grand Rounds & CME — Primary Biliary CholangitisManu Jain, MD
Clinical management — Primary Biliary CholangitisKevin Scully, MB BCh BAO
Multidisciplinary care — Primary Biliary CholangitisSigrid Barrett, PhD, RN
Panel: Impacts of Aging with Primary Biliary CholangitisUluer Β· Desch Β· Brace Β· Mentch
The Bloom Effect: How Resilience Transforms UsKimberly Morse, MSW, LCSW
Primary Biliary Cholangitis in the Context of the ExposomeGabriela Oates, PhD
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Open Questions
Ask & answer
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Survey
2–3 min
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Support Groups
Find your people

Anyone can ask. Sign in to answer. Peer support — not medical advice, and no PHI.

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What do you wish you had known earlier?
3 answers Β· 12 following
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What has helped you most in managing day to day?
5 answers Β· 8 following
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Survey

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Take a Patient Survey2–3 min Β· optional

Reflect on how you are doing β€” anonymous, with only de-identified group averages shown.

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Certified Centers of Excellence

CFF network

Care centers and specialists for Primary Biliary Cholangitis, from Tomeko’s verified provider directory (CMS NPPES).

Boston Children's HospitalBoston, MA
Children's Hospital of PhiladelphiaPhiladelphia, PA
Cincinnati Children's HospitalCincinnati, OH
Stanford / Lucile Packard Children'sPalo Alto, CA
Johns HopkinsBaltimore, MD
Texas Children's HospitalHouston, TX

Representative CFF centers β€” the official CFF directory has the complete, current list.

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Nonprofits & Foundations

Grants & Financial Help

Financial Guidance CompassFree, personalized care-coordination and financial-guidance service for people with PBC and their families.
HealthWell FoundationCopay and insurance-premium assistance for Primary Biliary Cholangitis treatments.
Patient Access Network FoundationHelps cover out-of-pocket costs for Primary Biliary Cholangitis medications.

Representative programs β€” illustrative only. Eligibility and availability vary; not a guarantee of assistance.

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State of the Disease
2026 report
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Getting Started Pack
PDF guide
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Daily Management Guide
PDF Β· illustrated
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College & Career Planning
PDF guide

Patient & Family Guides

Sources cited
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2026 State of the Disease ReportPDF Β· updated 2026

An annual snapshot of Primary Biliary Cholangitis research, treatment access and outcomes, written in plain language for patients and families.

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Getting Started PackPDF guide

Practical starting points and things to plan for in the first year after diagnosis.

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Daily Management GuidePDF Β· illustrated

Step-by-step guidance, what to expect, and a sample daily routine.

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College & Career PlanningPDF guide

Disclosure, accommodations, insurance transitions and workplace planning for teens and young adults with PBC.

Sources: GARD (NIH/NCATS), Orphanet Β· last reviewed 2026. Educational only β€” not medical advice.

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