Rare choreic movement disorder

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ORPHA:306715
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Overview

Rare choreic movement disorder (Orphanet code 306715) is an umbrella term used to describe a group of very rare conditions in which the main symptom is chorea — involuntary, irregular, and unpredictable movements that seem to flow from one part of the body to another. These movements can affect the face, arms, legs, and trunk, and may look like fidgeting, dancing, or restless motions that the person cannot control. The term covers choreic disorders that do not fit neatly into more well-known conditions like Huntington disease or benign hereditary chorea. Because this is a broad classification rather than a single well-defined disease, the underlying cause can vary. Some forms are genetic, while others may have unclear origins. The severity ranges widely — some people have mild movements that are mostly a nuisance, while others experience movements severe enough to interfere with walking, eating, speaking, and daily activities. Additional symptoms may include problems with balance, coordination, muscle tone, and sometimes cognitive or behavioral changes. Treatment is mainly symptomatic, meaning it focuses on reducing the severity of the involuntary movements and improving quality of life. Medications that modify dopamine signaling in the brain, such as tetrabenazine or deutetrabenazine, may be used. Physical therapy, occupational therapy, and speech therapy can also help. Because the exact diagnosis within this group matters for prognosis and management, thorough evaluation by a movement disorder specialist and genetic testing are strongly recommended.

Key symptoms:

Involuntary jerky or flowing movements of the arms and legsFacial grimacing or involuntary facial movementsDifficulty walking or unsteady gaitProblems with balance and coordinationTrouble with fine motor tasks like writing or buttoning clothesSlurred or unclear speechDifficulty swallowingRestlessness or fidgety behaviorMuscle weakness or changes in muscle toneDifficulty concentrating or memory problemsBehavioral or mood changesInvoluntary movements that worsen with stress or fatigue

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 Rare choreic movement disorder.

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No actively recruiting trials found for Rare choreic movement disorder at this time.

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Search ClinicalTrials.gov ↗Join the Rare choreic movement disorder community →

No specialists are currently listed for Rare choreic movement disorder.

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 Rare choreic movement disorder.

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Community

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Latest news about Rare choreic movement disorder

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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 is the specific cause of my chorea, and has genetic testing been done?,Are there medications that could help reduce my involuntary movements?,What side effects should I watch for with the prescribed treatments?,Is this condition likely to get worse over time, or could it stay stable?,Should my family members be tested for this condition?,What therapies (physical, occupational, speech) would benefit me most?,Are there any clinical trials or new treatments being studied for my condition?

Common questions about Rare choreic movement disorder

What is Rare choreic movement disorder?

Rare choreic movement disorder (Orphanet code 306715) is an umbrella term used to describe a group of very rare conditions in which the main symptom is chorea — involuntary, irregular, and unpredictable movements that seem to flow from one part of the body to another. These movements can affect the face, arms, legs, and trunk, and may look like fidgeting, dancing, or restless motions that the person cannot control. The term covers choreic disorders that do not fit neatly into more well-known conditions like Huntington disease or benign hereditary chorea. Because this is a broad classification