Hereditary coproporphyria

Last reviewed

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ORPHA:79273OMIM:121300E80.2
Who is this for?
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10Specialists8Treatment centers

Where are you in your journey?

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

Clinical phenotype terms— hover any for plain English:

Elevated urinary delta-aminolevulinic acidHP:0003163Abnormal circulating porphyrin concentrationHP:0010472Episodic vomitingHP:0002572Proximal upper limb muscle weaknessHP:0008997Limb painHP:0009763PorphyrinuriaHP:0010473Abnormal skin morphologyHP:0011121Increased urinary porphobilinogenHP:0012217Dark urineHP:0040319Hepatocellular carcinomaHP:0001402
Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Hereditary coproporphyria.

View clinical trials →

No actively recruiting trials found for Hereditary coproporphyria at this time.

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

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Specialists

10 foundView all specialists →
HM
Herbert L. Bonkovsky, M.D.
WINSTON SALEM, NC
Specialist
PI on 1 active trial
JM
James P. Kushner, M.D.
SALT LAKE CITY, UT
Specialist
PI on 1 active trial
RM
Robert J. Desnick, Ph.D., M.D.
NEW YORK, NY
Specialist
PI on 1 active trial
JM
Jay O. Boyle, M.D.
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Hereditary coproporphyria.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Hereditary coproporphyria

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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 Hereditary coproporphyria

Which specialists treat Hereditary coproporphyria?

10 specialists and care centers treating Hereditary coproporphyria are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.