Hepatic porphyria

Last reviewed March 21, 2026

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ORPHA:659694

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27Specialists 8Treatment centers

Where are you in your journey?

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.

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Overview

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Hepatic porphyria.

View clinical trials →

Clinical Trials

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No actively recruiting trials found for Hepatic porphyria at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Hepatic porphyria community →

Specialists

Showing 25 of 27View all specialists →

KM

Karl E Anderson, MD

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+8 more

PI on 3 active trials

Active trials Directions Travel grants

KA

Karl E Anderson

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+4 more

PI on 2 active trials

Active trials Directions Travel grants

EP

Eliane Sardh, MD PhD

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+2 more

PI on 1 active trial

Active trials Directions Travel grants

AM

Amy K Dickey, MD

Specialist

Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism Erythropoietic porphyria+2 more

PI on 1 active trial1 Hepatic porphyria publication

Active trials Directions Travel grants

AM

Amit Pandya, M.D.

Specialist

Hyperpigmentation of the skin Hypopigmentation of the skin Porphyria cutanea tarda

PI on 3 active trials

Active trials Directions Travel grants

MM

Manisha Balwani, MD

NEW YORK, NY

Specialist

Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism Erythropoietic porphyria+3 more

PI on 1 active trial

Active trials Directions Travel grants

PB

Pilar Bilbao

Specialist

Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism Erythropoietic porphyria+1 more

PI on 1 active trial

Active trials Directions Travel grants

NM

Nader Najafian, MD

BOSTON, MA

Specialist

Acute hepatic porphyria Atypical hemolytic uremic syndrome Congenital erythropoietic porphyria+5 more

PI on 3 active trials

Active trials Directions Travel grants

WP

Will Savage, MD PhD

Specialist

Autosomal erythropoietic protoporphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+4 more

PI on 4 active trials

Active trials Directions Travel grants

CM

Christer Andersson, MD

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+2 more

PI on 1 active trial

Active trials Directions Travel grants

KM

Karl Anderson, MD

Specialist

Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism Erythropoietic porphyria+2 more

PI on 1 active trial

Active trials Directions Travel grants

SM

Sean Rudnick, MD

CHARLOTTE, NC

Specialist

Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism Erythropoietic porphyria+2 more

PI on 1 active trial

Active trials Directions Travel grants

MM

Manisha C Balwani, MD

NEW YORK, NY

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+7 more

PI on 1 active trial

Active trials Directions Travel grants

CM

Cyndya Shibao, M.D

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+5 more

PI on 4 active trials

Active trials Directions Travel grants

PP

Per Dahlqvist, MD PhD

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+2 more

PI on 1 active trial

Active trials Directions Travel grants

EP

Elin Storjord, MD PhD

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+2 more

PI on 1 active trial

Active trials Directions Travel grants

DF

Dr. Yolandi Swart, FCPHM(SA)

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+2 more

PI on 1 active trial

Active trials Directions Travel grants

KM

Krzysztof Jaworski, MD

Specialist

Acute hepatic porphyria Acute liver failure Congenital erythropoietic porphyria+3 more

PI on 1 active trial

Active trials Directions Travel grants

RM

Robert J. Desnick, Ph.D., M.D.

NEW YORK, NY

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+4 more

PI on 1 active trial

Active trials Directions Travel grants

JM

James P. Kushner, M.D.

SALT LAKE CITY, UT

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+4 more

PI on 1 active trial

Active trials Directions Travel grants

HM

Herbert L. Bonkovsky, M.D.

WINSTON SALEM, NC

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+4 more

PI on 1 active trial

Active trials Directions Travel grants

KM

Karl E. Anderson, M.D.

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+4 more

PI on 1 active trial

Active trials Directions Travel grants

BM

Brendan McGuire, MD

Specialist

Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism Erythropoietic porphyria+6 more

PI on 1 active trial

Active trials Directions Travel grants

JM

Joseph R. Bloomer, M.D.

Specialist

Acute hepatic porphyria Congenital erythropoietic porphyria Disorder of porphyrin and heme metabolism+4 more

PI on 1 active trial

Active trials Directions Travel grants

WP

Will Savage, MD, PhD

Specialist

Anorectal malformation

PI on 2 active trials

Active trials Directions Travel grants

Treatment Centers

8 centers

Baylor College of Medicine Rare Disease Center ↗

Baylor College of Medicine

📍 Houston, TX

Stanford Medicine Rare Disease Center ↗

Stanford Medicine

📍 Stanford, CA

NIH Clinical Center Undiagnosed Diseases Program ↗

National Institutes of Health

📍 Bethesda, MD

UCLA UDN Clinical Site ↗

UCLA Health

📍 Los Angeles, CA

Baylor College of Medicine UDN Clinical Site ↗

Baylor College of Medicine

📍 Houston, TX

Harvard/MGH UDN Clinical Site ↗

Massachusetts General Hospital

📍 Boston, MA

Mayo Clinic Center for Individualized Medicine ↗

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

UCLA Rare Disease Day Program ↗

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Hepatic porphyria.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Hepatic porphyria

No recent news articles for Hepatic porphyria.

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Hepatic porphyria

Which specialists treat Hepatic porphyria?

25 specialists and care centers treating Hepatic porphyria are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.