Familial benign copper deficiency

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ORPHA:1551OMIM:121270E83.0
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Overview

Familial benign copper deficiency is an extremely rare inherited condition in which the body has lower-than-normal levels of copper in the blood, but without the severe or life-threatening complications seen in other copper deficiency disorders such as Menkes disease. Copper is an essential trace mineral that plays important roles in many body functions, including the formation of red blood cells, maintaining nerve cells, supporting the immune system, and helping the body absorb iron. In this condition, affected individuals may have low serum copper and ceruloplasmin (the main copper-carrying protein in the blood), but they generally do not develop the serious neurological damage or connective tissue problems that occur in more severe forms of copper metabolism disorders. The condition is considered 'benign' because most affected individuals remain healthy or have only mild symptoms. Some people may experience mild anemia or slightly reduced immune function, but overall the prognosis is favorable. Because the condition runs in families, it is typically discovered when blood tests reveal low copper levels during routine evaluation or family screening. Treatment, when needed, may include copper supplementation, though many individuals do not require any specific therapy. The condition is important to recognize so that it is not confused with more serious copper deficiency syndromes, which would require more aggressive treatment and monitoring.

Also known as:

Key symptoms:

Low copper levels in the bloodLow ceruloplasmin levelsMild anemiaGenerally healthy appearancePossible mild fatiguePossible slightly reduced immune function

Clinical phenotype terms (12)— hover any for plain English
Early baldingHP:0002234Diaphyseal undertubulationHP:0005019Aplasia/Hypoplasia of the foveaHP:0008060Decreased circulating copper concentrationHP:0011967
Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Familial benign copper deficiency.

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No actively recruiting trials found for Familial benign copper deficiency at this time.

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No specialists are currently listed for Familial benign copper deficiency.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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 Familial benign copper deficiency.

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Community

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Caregiver Resources

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Social Security Disability

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Questions for your doctor

Bring these to your next appointment

  • Q1.How can we be sure this is the benign form and not a more serious copper deficiency disorder?,Does my child (or do I) need copper supplementation, and if so, how much and for how long?,How often should copper and ceruloplasmin levels be checked?,Should other family members be tested for this condition?,Are there any symptoms I should watch for that would suggest the condition is more serious than expected?,Is genetic testing available or recommended for our family?,Are there any dietary changes that could help maintain healthy copper levels?

Common questions about Familial benign copper deficiency

What is Familial benign copper deficiency?

Familial benign copper deficiency is an extremely rare inherited condition in which the body has lower-than-normal levels of copper in the blood, but without the severe or life-threatening complications seen in other copper deficiency disorders such as Menkes disease. Copper is an essential trace mineral that plays important roles in many body functions, including the formation of red blood cells, maintaining nerve cells, supporting the immune system, and helping the body absorb iron. In this condition, affected individuals may have low serum copper and ceruloplasmin (the main copper-carrying

How is Familial benign copper deficiency inherited?

Familial benign copper deficiency follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.