Disorder of copper metabolism

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9Specialists8Treatment centers

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

Disorder of copper metabolism is a broad term that covers a group of rare conditions where the body cannot properly handle copper. Copper is a trace mineral that your body needs in small amounts for many important functions, including making energy, building connective tissue, and supporting your brain and immune system. When copper metabolism goes wrong, the body may accumulate too much copper in organs like the liver and brain, or it may not have enough copper to function properly. The two most well-known disorders of copper metabolism are Wilson disease and Menkes disease. In Wilson disease, copper builds up in the liver, brain, and other organs, causing liver damage, neurological problems, and psychiatric symptoms. In Menkes disease, the body cannot absorb enough copper from food, leading to severe developmental delays, weak muscles, and brittle hair. Other rarer forms also exist. Symptoms vary widely depending on the specific condition but can include liver problems, movement difficulties, tremors, personality changes, and developmental delays. Treatment depends on the underlying cause. For Wilson disease, medications like penicillamine, trientine, and zinc can help remove excess copper or block its absorption. For Menkes disease, copper injections may be given, though outcomes remain limited. Early diagnosis and treatment are critical to preventing permanent organ damage.

Key symptoms:

Liver disease or jaundice (yellowing of skin and eyes)Tremors or shakingDifficulty with coordination and balanceDifficulty speaking or swallowingPersonality or mood changesFatigue and weaknessAbdominal pain or swellingKayser-Fleischer rings (brownish rings around the colored part of the eye)Developmental delays in childrenSeizuresBrittle or kinky hairLow muscle tone in infantsPoor weight gain or failure to thriveBone abnormalitiesAnemia

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
Mar 2026Copper Supplementation in Cirrhosis

University of Washington — NA

TrialRECRUITING
Jun 2021Zinc, Chromium, Vitamin C, and Copper Combination Supplement for Prediabetes Progression

Indonesia University — PHASE2

TrialACTIVE NOT RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Disorder of copper metabolism.

View clinical trials →

No actively recruiting trials found for Disorder of copper metabolism at this time.

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

Search ClinicalTrials.gov ↗Join the Disorder of copper metabolism community →

Specialists

9 foundView all specialists →
DM
David S Saperstein, MD
BELLEVUE, WA
Specialist
PI on 1 active trial
MF
Michael L Schilsky, MD FAASLD
New Haven, Connecticut
Specialist

Rare Disease Specialist

PI on 1 active trial
TM
Todd D Levine, MD
Specialist
PI on 3 active trials
RP
Rina Agustina, MD, MSc, PhD
Specialist
PI on 1 active trial
LM
Lei Yu, MD
OMAHA, NE
Specialist
PI on 1 active trial1 Disorder of copper metabolism publication
RA
Ronnie Aronson
STAMFORD, CT
Specialist
PI on 1 active trial4 Disorder of copper metabolism publications
BP
Bart CJ Fauser, MD PhD
Specialist
PI on 1 active trial
MS
Mike Schilsky
NEW HAVEN, CT
Specialist
PI on 1 active trial9 Disorder of copper metabolism publications
HM
Hala M Demerdash, MD
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 Disorder of copper metabolism.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Disorder of copper metabolism

Disease timeline:

New recruiting trial: Copper Supplementation in Cirrhosis

A new clinical trial is recruiting patients for Disorder of copper metabolism

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.

Questions for your doctor

Bring these to your next appointment

  • Q1.Which specific type of copper metabolism disorder do I or my child have?,What genetic test results confirm the diagnosis, and should other family members be tested?,What are the treatment options, and what side effects should I watch for?,How often will blood tests and monitoring be needed?,Are there specific foods I need to avoid or dietary changes I should make?,What are the warning signs that I should go to the emergency room?,Are there any clinical trials or new treatments being studied that might be appropriate?

Common questions about Disorder of copper metabolism

What is Disorder of copper metabolism?

Disorder of copper metabolism is a broad term that covers a group of rare conditions where the body cannot properly handle copper. Copper is a trace mineral that your body needs in small amounts for many important functions, including making energy, building connective tissue, and supporting your brain and immune system. When copper metabolism goes wrong, the body may accumulate too much copper in organs like the liver and brain, or it may not have enough copper to function properly. The two most well-known disorders of copper metabolism are Wilson disease and Menkes disease. In Wilson diseas

Which specialists treat Disorder of copper metabolism?

9 specialists and care centers treating Disorder of copper metabolism are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.