Rare genetic neurological disorder

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ORPHA:71859
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12Specialists8Treatment centers

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Overview

Spinocerebellar ataxia type 3 (SCA3), also known as Machado-Joseph disease (MJD), is a rare inherited neurological disorder that progressively damages the cerebellum and other parts of the brain and spinal cord. The cerebellum is the part of the brain that controls balance and coordination, so when it is damaged, movement becomes increasingly difficult over time. People with SCA3 experience a gradual worsening of their ability to walk, speak, and swallow. The disease also affects eye movements, causing double vision or involuntary eye movements. Some people develop muscle stiffness, weakness, or uncontrollable muscle twitching. Cognitive changes and sleep problems can also occur. Symptoms usually begin in adulthood, though the age of onset can vary widely — even within the same family. There is currently no cure for SCA3, and no treatment has been proven to slow the disease's progression. Care focuses on managing symptoms and maintaining quality of life for as long as possible. Physical therapy, speech therapy, and occupational therapy play important roles in helping people stay as independent as possible. Researchers are actively studying gene-silencing therapies and other approaches that may one day slow or stop the disease.

Key symptoms:

Loss of balance and coordination (ataxia)Unsteady, stumbling walk (gait problems)Slurred or slow speech (dysarthria)Difficulty swallowing (dysphagia)Involuntary eye movements (nystagmus)Double vision or difficulty controlling eye movementsMuscle stiffness or rigidityMuscle weakness in the limbsMuscle cramps or twitching (fasciculations)Numbness or tingling in the hands and feetRestless legs or sleep disturbancesUrinary urgency or incontinenceMild memory or thinking difficultiesFatigueDrooping eyelids (ptosis)

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 ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Rare genetic neurological disorder.

View clinical trials →

No actively recruiting trials found for Rare genetic neurological disorder at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Rare genetic neurological disorder community →

Specialists

12 foundView all specialists →
LM
Leslie G Biesecker, M.D.
BETHESDA, MD
Specialist
PI on 8 active trials
SA
Srivandana Akshintala
WASHINGTON, DC
Specialist
PI on 1 active trial
SP
Staci M Peron, Ph.D.
Bethesda, Maryland
Specialist

Rare Disease Specialist

PI on 8 active trials
MP
Marcelo Serra, PhD
Buenos Aires, Buenos Aires
Specialist

Rare Disease Specialist

PI on 1 active trial
PP
Paolo Alfieri, MD, PhD
KENNETT SQUARE, PA
Specialist
PI on 1 active trial
AP
Anna Jansen, MD, PhD
Silver Spring, Maryland
Specialist

Rare Disease Specialist

PI on 2 active trials
MP
Maria Lourdes Posadas Martinez, PhD
Specialist
PI on 1 active trial
TM
Tetsuo Ashizawa, MD
GAINESVILLE, FL
Specialist
PI on 2 active trials

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 genetic neurological disorder.

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Community

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Latest news about Rare genetic neurological 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 my CAG repeat number, and what does that mean for when my symptoms might progress?,What therapies — physical, speech, or occupational — should I start now, even if my symptoms are mild?,Are there any clinical trials for SCA3 that I might be eligible to join?,What should I watch for that would mean I need to come in urgently or go to the emergency room?,Should my children or siblings be tested, and how should we approach that conversation?,What community or online support resources are available for people with SCA3 and their families?,How often should I be seen, and which specialists should be part of my care team?

Common questions about Rare genetic neurological disorder

What is Rare genetic neurological disorder?

Spinocerebellar ataxia type 3 (SCA3), also known as Machado-Joseph disease (MJD), is a rare inherited neurological disorder that progressively damages the cerebellum and other parts of the brain and spinal cord. The cerebellum is the part of the brain that controls balance and coordination, so when it is damaged, movement becomes increasingly difficult over time. People with SCA3 experience a gradual worsening of their ability to walk, speak, and swallow. The disease also affects eye movements, causing double vision or involuntary eye movements. Some people develop muscle stiffness, weakness,

How is Rare genetic neurological disorder inherited?

Rare genetic neurological disorder follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

Which specialists treat Rare genetic neurological disorder?

12 specialists and care centers treating Rare genetic neurological disorder are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.