Disorder of neurotransmitter metabolism and transport

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ORPHA:79169
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8Treatment centers

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Overview

Disorders of neurotransmitter metabolism and transport (Orphanet code 79169) are a group of rare inherited conditions that affect how the brain makes, breaks down, or moves chemical messengers called neurotransmitters. Neurotransmitters — such as dopamine, serotonin, GABA, and glycine — are the signals that nerve cells use to communicate with each other. When the body cannot properly produce or handle these chemicals, the brain and nervous system do not work as they should. These disorders can cause a wide range of neurological problems, often starting in infancy or early childhood. Common symptoms include movement difficulties, muscle tone problems (either too stiff or too floppy), developmental delays, seizures, and mood or behavioral changes. Because many different genes and pathways are involved, the exact symptoms and severity vary greatly from person to person depending on which specific disorder they have. Treatment depends on the specific type of neurotransmitter disorder. Some forms respond well to vitamin supplements or medications that replace or support the missing chemical, while others are harder to treat. Early diagnosis is very important because some of these conditions can be significantly improved with the right treatment started early. This group includes conditions such as aromatic L-amino acid decarboxylase (AADC) deficiency, succinic semialdehyde dehydrogenase (SSADH) deficiency, and several others.

Key symptoms:

Delayed development of motor skills such as sitting, standing, or walkingIntellectual disability or learning difficultiesSeizures or epilepsyAbnormal muscle tone — muscles that are too stiff or too floppyInvoluntary movements such as tremors or writhing motionsDifficulty speaking or communicatingBehavioral problems such as hyperactivity, aggression, or anxietySleep disturbancesExcessive sweating or temperature regulation problemsEye movement abnormalities such as drooping eyelids or abnormal eye rollingMood swings or emotional instabilityFatigue and low energyFeeding difficulties in infancy

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 neurotransmitter metabolism and transport.

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No actively recruiting trials found for Disorder of neurotransmitter metabolism and transport at this time.

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No specialists are currently listed for Disorder of neurotransmitter metabolism 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 neurotransmitter metabolism and transport.

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Community

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Latest news about Disorder of neurotransmitter metabolism 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.Which specific type of neurotransmitter disorder does my child have, and what gene is involved?,What treatment options are available for this specific subtype, and how quickly should we start?,Are there any treatments that could make symptoms worse that we should avoid?,What developmental outcomes can we realistically hope for with early treatment?,Should other family members be tested, and what is the chance of having another affected child?,Is my child eligible for any clinical trials or gene therapy programs?,What therapies — physical, speech, occupational — should we be starting right away?

Common questions about Disorder of neurotransmitter metabolism and transport

What is Disorder of neurotransmitter metabolism and transport?

Disorders of neurotransmitter metabolism and transport (Orphanet code 79169) are a group of rare inherited conditions that affect how the brain makes, breaks down, or moves chemical messengers called neurotransmitters. Neurotransmitters — such as dopamine, serotonin, GABA, and glycine — are the signals that nerve cells use to communicate with each other. When the body cannot properly produce or handle these chemicals, the brain and nervous system do not work as they should. These disorders can cause a wide range of neurological problems, often starting in infancy or early childhood. Common sy