Disorder of amino acid absorption and transport

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ORPHA:79166E72.0
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Overview

Disorders of amino acid absorption and transport are a group of rare inherited conditions where the body cannot properly absorb or move certain amino acids — the building blocks of proteins — through the walls of the intestine and kidneys. Normally, special proteins called transporters act like tiny doors that let amino acids pass from food into the bloodstream and help the kidneys recycle them back into the body. When these transporters are faulty due to a gene change, amino acids are lost in the urine and not properly absorbed from food, leading to deficiencies that can affect many body systems. The symptoms and severity vary widely depending on which transporter is affected. Some people have very mild symptoms or none at all, while others experience skin rashes, neurological problems, poor growth, or kidney issues. Common examples in this group include Hartnup disorder, cystinuria, lysinuric protein intolerance, and iminoglycinuria. Each has its own pattern of amino acids affected and its own set of symptoms. Treatment is generally focused on managing symptoms and preventing complications. This often includes dietary changes, vitamin or amino acid supplements, and in some cases specific medications. With proper management, many people with these conditions can live relatively normal lives, though lifelong monitoring is usually needed.

Key symptoms:

Skin rash that gets worse in sunlight (pellagra-like rash)Diarrhea or loose stoolsPoor growth or failure to thrive in childrenKidney stones (especially in cystinuria)Muscle weaknessNeurological problems such as unsteady walking or coordination difficultiesIntellectual disability or learning difficulties in some subtypesPsychiatric symptoms such as mood changes or confusionFrequent urinary tract infectionsEnlarged liver or spleen (in lysinuric protein intolerance)Protein intolerance — feeling sick after eating protein-rich foodsAnemia (low red blood cell count)Recurrent episodes of vomiting

Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

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 amino acid absorption and transport.

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

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

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Community

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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.Which specific type of amino acid transport disorder does my child or I have, and which gene is affected?,What dietary changes do I need to make, and should I work with a metabolic dietitian?,What supplements do I need to take, and how will we know if they are working?,How often do I need blood and urine tests to monitor my condition?,What symptoms should prompt me to go to the emergency room?,Is genetic counseling recommended for other family members?,Are there any clinical trials or new treatments I should know about?

Common questions about Disorder of amino acid absorption and transport

What is Disorder of amino acid absorption and transport?

Disorders of amino acid absorption and transport are a group of rare inherited conditions where the body cannot properly absorb or move certain amino acids — the building blocks of proteins — through the walls of the intestine and kidneys. Normally, special proteins called transporters act like tiny doors that let amino acids pass from food into the bloodstream and help the kidneys recycle them back into the body. When these transporters are faulty due to a gene change, amino acids are lost in the urine and not properly absorbed from food, leading to deficiencies that can affect many body syst

How is Disorder of amino acid absorption and transport inherited?

Disorder of amino acid absorption and transport follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.