Overview
Rare parkinsonian syndrome due to neurodegenerative disease is a group of uncommon conditions that share features with Parkinson's disease but are caused by different underlying brain changes. These syndromes involve the gradual loss of nerve cells in the brain, leading to movement problems such as slowness, stiffness, tremor, and difficulty with balance. Unlike typical Parkinson's disease, these rare forms may not respond well to standard Parkinson's medications and often come with additional symptoms that set them apart. This category includes several distinct conditions such as progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and dementia with Lewy bodies (DLB), among others. Each of these has its own pattern of symptoms, but they all share the core feature of parkinsonism — meaning they cause movement difficulties similar to Parkinson's disease. Patients may also experience problems with thinking, speech, swallowing, eye movements, or autonomic functions like blood pressure control and bladder function. Treatment is mainly supportive and aimed at managing symptoms, as there are currently no cures or proven disease-modifying therapies for most of these conditions. Levodopa, the main drug used in Parkinson's disease, may provide limited or no benefit. Physical therapy, occupational therapy, and speech therapy play important roles in maintaining function and quality of life. Research is ongoing to better understand these diseases and develop new treatments.
Key symptoms:
Slowness of movementMuscle stiffness or rigidityTremor at rest or with movementDifficulty with balance and frequent fallsProblems with walking and coordinationSlurred or slow speechDifficulty swallowingChanges in thinking or memoryAbnormal eye movements or difficulty looking up or downLow blood pressure when standing up (dizziness or fainting)Bladder problems or urinary incontinenceSleep disturbancesDepression or mood changesLoss of facial expressionInvoluntary muscle contractions or abnormal postures
Variable
Can be inherited in different ways depending on the underlying gene
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
5 eventsAssociation de Recherche Bibliographique pour les Neurosciences — NA
Medical University Innsbruck — NA
University Hospital, Bordeaux — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Rare parkinsonian syndrome due to neurodegenerative disease.
5 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Specialists
View all specialists →No specialists are currently listed for Rare parkinsonian syndrome due to neurodegenerative disease.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Rare parkinsonian syndrome due to neurodegenerative disease.
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 parkinsonian syndrome do I have, and how was this determined?,Would genetic testing be helpful for me or my family members?,What symptoms should I watch for that would indicate the disease is progressing?,Are there any clinical trials I might be eligible for?,What therapies (physical, occupational, speech) do you recommend, and how often?,How should we plan for future care needs, including advance directives?,What can be done to reduce my risk of falls and swallowing problems?
Common questions about Rare parkinsonian syndrome due to neurodegenerative disease
What is Rare parkinsonian syndrome due to neurodegenerative disease?
Rare parkinsonian syndrome due to neurodegenerative disease is a group of uncommon conditions that share features with Parkinson's disease but are caused by different underlying brain changes. These syndromes involve the gradual loss of nerve cells in the brain, leading to movement problems such as slowness, stiffness, tremor, and difficulty with balance. Unlike typical Parkinson's disease, these rare forms may not respond well to standard Parkinson's medications and often come with additional symptoms that set them apart. This category includes several distinct conditions such as progressive
At what age does Rare parkinsonian syndrome due to neurodegenerative disease typically begin?
Typical onset of Rare parkinsonian syndrome due to neurodegenerative disease is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Rare parkinsonian syndrome due to neurodegenerative disease?
Yes — 5 recruiting clinical trials are currently listed for Rare parkinsonian syndrome due to neurodegenerative disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.