Disorder of metabolite absorption and transport

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ORPHA:309824
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Overview

Disorder of metabolite absorption and transport is a broad group of rare inherited conditions where the body has trouble absorbing or moving important nutrients and small molecules (called metabolites) across cell membranes or within the body. These metabolites include things like amino acids, sugars, vitamins, minerals, and fats. Normally, specialized transport proteins in the gut, kidneys, and other organs help move these substances into and out of cells. When these transport systems do not work properly, the body may not get enough of certain essential nutrients, or harmful substances may build up. Symptoms vary widely depending on which specific transport system is affected. Some patients may experience poor growth, nutritional deficiencies, digestive problems, kidney stones, or neurological issues. Symptoms can appear at any age, from infancy through adulthood, depending on the specific condition within this group. Treatment depends on the exact diagnosis and typically focuses on replacing the missing nutrient, adjusting the diet, or using medications to manage symptoms. Some conditions in this group respond very well to supplementation or dietary changes, while others may be more difficult to manage. Early diagnosis through metabolic testing and genetic analysis is important because timely treatment can prevent serious complications and improve quality of life. Because this is a category of many different conditions rather than a single disease, working with a metabolic specialist is essential to get the right diagnosis and personalized care plan.

Key symptoms:

Poor growth or failure to thrive in childrenChronic diarrhea or digestive problemsNutritional deficiencies despite adequate dietKidney stones or kidney problemsMuscle weakness or fatigueSkin rashes or changesBone pain or softening of bonesDevelopmental delays in childrenSeizures or neurological problemsAnemia or low blood countsFrequent infectionsDehydration episodesLiver enlargement or liver problemsVision or eye problemsMood or behavioral changes

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 ↗

Treatments

No FDA-approved treatments are currently listed for Disorder of metabolite absorption and transport.

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No actively recruiting trials found for Disorder of metabolite absorption and transport at this time.

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No specialists are currently listed for Disorder of metabolite absorption and transport.

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 Disorder of metabolite absorption and transport.

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Community

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Latest news about Disorder of metabolite absorption and transport

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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.

Questions for your doctor

Bring these to your next appointment

  • Q1.What specific type of metabolite transport disorder does my child or I have, and which gene is involved?,What dietary changes are needed, and can I work with a specialized dietitian?,What supplements or medications are recommended, and are there any side effects?,How often will blood and urine tests be needed to monitor the condition?,What are the warning signs of a metabolic crisis, and what should I do in an emergency?,Are there any long-term complications I should watch for, such as kidney or neurological problems?,Should other family members be tested for this condition?

Common questions about Disorder of metabolite absorption and transport

What is Disorder of metabolite absorption and transport?

Disorder of metabolite absorption and transport is a broad group of rare inherited conditions where the body has trouble absorbing or moving important nutrients and small molecules (called metabolites) across cell membranes or within the body. These metabolites include things like amino acids, sugars, vitamins, minerals, and fats. Normally, specialized transport proteins in the gut, kidneys, and other organs help move these substances into and out of cells. When these transport systems do not work properly, the body may not get enough of certain essential nutrients, or harmful substances may b