Multiple System Atrophy

Disease Overview

Summary

Multiple system atrophy (MSA) is a rare sporadic progressive neurological disorder characterized by a varying combination of symptoms and signs. Onset is during adulthood (>30 years). Affected individuals may have symptoms similar to those found in Parkinson’s disease (parkinsonism), cerebellar signs such as progressive impairment of the ability to coordinate voluntary movements (cerebellar ataxia) and impaired functioning of the portion of the nervous system (autonomic nervous system) that regulates certain involuntary body functions (autonomic failure) such as heart rate, blood pressure, sweating and bowel and bladder control.

MSA is further classified into MSA-P (parkinsonian type) and MSA-C (cerebellar type), based on the predominant clinical features.

The exact cause of MSA is unknown. Most cases are sporadic, without other affected people in the family.

There is no cure yet. Current treatment focuses on managing the symptoms and maintaining quality of life.

Introduction

MSA was formerly thought to be distinct syndromes: olivopontocerebellar atrophy (OPCA), Shy-Drager syndrome and striatonigral degeneration (SND). The term “MSA” was coined in 1969 to encompass these previously distinct entities, highlighting their shared neurodegenerative nature. MSA is further classified into MSA-P (Parkinsonian type) and MSA-C (cerebellar type), based on the predominant clinical features.

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Synonyms

• MSA
• multisystem atrophy

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Subdivisions

• MSA-C (cerebellar type)
• MSA-P (Parkinsonian type)

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Signs & Symptoms

The range, severity and distribution of symptoms of multiple systemic atrophy (SMA) vary greatly among affected people. For example, some may initially have only mild symptoms for several years and others may have severe symptoms early in the course of the disease.

MSA is a disease that affects movement, automatic body functions (like bladder control and blood pressure) and coordination. It usually starts between the ages of 54 and 58 but can begin earlier or later. Symptoms of MSA may vary depending on which form of MSA predominates, but in general, it can cause the progressive loss of motor skills and approximately 50% of individuals are wheelchair-bound within 5-6 years of the onset of motor symptoms. Eventually, affected individuals may become confined to bed and have life-threatening complications.

Some people notice early warning signs, sometimes years before a full diagnosis:

• Acting out dreams while sleeping (REM sleep behavior disorder or RBD)
• Bladder problems like leaking urine or trouble emptying the bladder
• Mild movement changes such as slight stiffness or clumsiness, even if not obvious at first

There are two types of MSA depending on which symptoms are strongest:

MSA-P (Parkinsonian type)

In MSA-P, Parkinson-like movement problems are the main symptoms. These include:

• Slowness of movement (bradykinesia) where it takes longer to do things
• Muscle stiffness (rigidity) where muscles feel tight and hard to move
• Balance problems and increased risk of falling
• Tremor (shaking), especially when trying to hold a posture (a jerky type, not the classic resting tremor of Parkinson’s)
• Poor response to Parkinson’s medications as medicines like levodopa usually don’t help much
• Speech changes presenting as a low, soft, sometimes quivering or strained voice
• Posture changes such as bending forward at the waist (camptocormia) or neck (anterocollis)
• Muscle spasms with unusual, sometimes painful muscle contractions causing abnormal postures

MSA-C (cerebellar type)

In MSA-C, coordination and balance problems are the main symptoms. These include:

• Clumsiness such as trouble with hand movements, buttoning clothes and other activities
• Unsteady walking (gait ataxia) where walking becomes wide-based and wobbly
• Slurred speech (ataxic dysarthria)
• Jerky eye movements (nystagmus)
• Difficulty coordinating muscles where it is harder to do tasks that need precise movements

Many people with both types of MSA develop problems with the body’s automatic (autonomic) functions:

• Bladder problems:
  • Urgent need to urinate
  • Leaking urine (incontinence)
  • Trouble emptying the bladder completely
  • Some may eventually need a catheter
• Erectile dysfunction which is an early and common symptom in men
• Low blood pressure when standing up (orthostatic hypotension) which causes dizziness or fainting
• Constipation where bowel movements become infrequent or hard
• Dry skin due to reduced sweating (anhidrosis)
• Cold hands and feet due to poor blood flow (Raynaud’s phenomenon)

Other common features may include:

• Breathing problems:
  • Stridor — noisy, high-pitched breathing, often while sleeping
  • Sleep apnea — breathing stops during sleep
• Sleep disorders:
  • Acting out dreams (RBD)
  • Daytime sleepiness and restless legs syndrome
• Cognitive problems:
  • Mild memory and thinking difficulties but dementia is rare
  • Emotional swings like laughing or crying without reason (emotional incontinence)
• Mood problems:
  • Anxiety and depression are common

In Europe and North America, MSA-P is more common. In Japan, MSA-C is more common.

The main type (MSA-P or MSA-C) can shift over time as the disease progresses.

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Causes

The exact underlying cause of MSA is unknown. It appears to occur randomly for unknown reasons (sporadically).

In rare cases, certain genetic changes have been found. For example, changes in the genes called COQ2, LRRK2, GBA1 and CHCHD2 have been linked to MSA in at least one patient.

However, large genetic studies have not found any major genetic risk factors for MSA. One study looking at people from Europe and North America didn’t find strong links to genes like COQ2 or SNCA (which had been suspected earlier). They did find a possible connection with a gene called MAPT, but more research is needed.

MSA is a type of synucleinopathy, meaning it involves clumps of a protein called alpha-synuclein building up inside brain cells. Accumulation of alpha-synuclein in the brain has also been seen in other neurological disorders such as Parkinson’s disease. But unlike Parkinson’s disease, where the clumps are inside neurons, in MSA, the clumps mostly form inside support cells called oligodendrocytes.

These clumps are known as glial cytoplasmic inclusions which are always present in the brain of someone with MSA and are unique to this disease. They damage different parts of the brain including areas that control movement, balance and vital body functions like blood pressure and bladder control.

Researchers have found other proteins (tau, ubiquitin and LRRK2) inside these clumps too. The structure of alpha-synuclein clumps in MSA is different from those seen in Parkinson’s, which may explain why the diseases behave differently.

The areas most affected in MSA are:

• Basal ganglia (movement control)
• Brainstem (vital functions like breathing and blood pressure)
• Cerebellum (balance and coordination)
• Spinal cord pathways

The specific brain areas that are most damaged explain why some people with MSA more problems with movement (MSA-P subtype) and others have more problems with balance and coordination (MSA-C subtype).

More research is necessary to determine the exact role that alpha-synuclein plays in the development of MSA and to fully understand the complex, underlying mechanisms that ultimately lead to the disorder.

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Affected populations

MSA is a rare disease. Each year, about 0.6 people out of every 100,000 are newly diagnosed. In people over 50, the rate is a little higher, about 3 cases per 100,000. The peak onset of MSA is between 55-60 years of age with a range from 30 to over 90 years.

In the United States, it is estimated that MSA affects about 15,000 to 50,000 people.

Most people start to have symptoms in their 50s or early 60s. Males and females are affected about equally, though some studies show males may be diagnosed more often (possibly because early symptoms like impotence are easier to spot in males).

MSA affects people of all races and ethnicities and has been reported worldwide.
There are no proven environmental risks.

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Disorders with Similar Symptoms

Symptoms of the following disorders can be similar to those of MSA. Comparisons may be useful for a differential diagnosis:

Parkinson’s disease (PD) is a slowly progressive neurologic movement disorder characterized by involuntary, resting tremor, muscular stiffness or lack of flexibility (rigidity), slowness of movement (bradykinesia) and difficulty controlling voluntary movements. It also commonly causes autonomic symptoms and, in advanced, older, patients, dementia. Parkinson’s disease usually begins in late adulthood. It is slowly progressive but may not become incapacitating for many years.

Symptoms like those of PD (Parkinsonian symptoms) may also develop secondary to hydrocephalus (a condition in which excessive cerebrospinal fluid accumulates the spaces in the brain (ventricles), increasing pressure in the brain. Parkinsonian symptoms may also occur because of head trauma, inflammation of the brain (encephalitis), strokes (infarcts), or tumors deep within the cerebral hemispheres (cerebrum) and base of the brain (i.e., basal ganglia), or exposure to certain drugs and toxins.

Progressive supranuclear palsy (PSP) is a rare degenerative neurological disorder characterized by postural instability and falls, often backwards, loss of control of voluntary eye movement (supranuclear gaze palsy or SNGP), impaired voluntary muscle activity (akinesia), abnormal stiffness (rigidity), speech difficulties (dysarthria) and problems related to swallowing and eating (dysphagia). The presence of vertical eye movement abnormalities and the absence of orthostatic hypotension suggest PSP. Unlike MSA, in which alpha-synuclein accumulates in the brain, a different protein called tau accumulates in PSP. The mean onset age is 60-65 years.

Corticobasal degeneration (CBD) is an even rarer progressive neurological disorder characterized by cell loss and shrinkage (atrophy) in certain areas of the brain (cerebral cortex and substantia nigra). Apraxia is a relatively unusual sign, and its presence suggests CBD rather than MSA. (as in PSP, a different protein called tau accumulates in the brain in CBD).

Hereditary olivopontocerebellar atrophy (OPCA) describes a group of rare disorders characterized by progressive balance problems (disequilibrium), progressive impairment of the ability to coordinate voluntary movements (cerebellar ataxia) and difficulty speaking or slurred speech (dysarthria). Additional symptoms may include generalized weakness, difficulty swallowing (dysphagia) and/or the progressive loss of intellectual abilities and mental deterioration (dementia). There are several forms of hereditary OPCA.

Pure autonomic failure (PAF) is very rare and characterized by orthostatic hypotension that has been present for 5 years or more without other evidence of a neurological condition. Orthostatic hypotension is a condition in which an excessive decrease in blood pressure occurs upon standing potentially resulting in dizziness or momentary loss of consciousness (syncope). Additional symptoms associated with autonomic failure include fatigue, blurred vision, impaired bladder and bowel control and impotence. In some people, the skin may become extremely dry because of decreased ability to sweat.

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Diagnosis

Many people affected with multiple system atrophy (MSA) may be first incorrectly diagnosed as having Parkinson’s disease because there are many similar features between these conditions.

Diagnosis of MSA is based on medical history and detailed examination for the characteristic clinical features, brain scan findings and absence of certain features.

• • Magnetic resonance imaging (MRI) may identify changes that suggest MSA or rule out other causes of the symptoms.
  • Positron emission tomography (PET) scans can be used to monitor metabolic function in specific parts of the brain.
  • Dopamine transporter (DaT) scans can assess the distribution and activity of dopamine in the brain.

Core motor symptoms include:

• Parkinsonism, including bradykinesia along with stiffness (rigidity) or a tremor, that usually respond poorly to Parkinson’s medications like levodopa
• Cerebellar problems, including trouble with walking (gait ataxia), clumsy movements of the arms or legs (limb ataxia), slurred or difficult speech (cerebellar dysarthria) and problems moving the eyes normally (like constant eye jerking or over-shooting when moving between targets)

Core autonomic symptoms:

• Bladder problems including unexplained trouble urinating, frequent urgency, leakage, or a large amount of urine left in the bladder after trying to empty it (over 100 mL), without other causes like prostate issues
• Blood pressure problems: a significant drop in blood pressure, at least 20 points, when standing up or during a tilt table test, usually within 3 minutes

• • In people with symptoms of faintness it is important to take the blood pressure first lying (supine) and then after 2 and 3 minutes standing, and to record the drop in the upper (systolic) and lower (diastolic) figure. An otherwise unexplained systolic drop of more than 20 mm is abnormal and one of over 30 mm more so.
  • During a tilt table test, a patient lies down flat on a table and straps are placed around the body to hold the patient in place. Then, the table is raised with the person’s head in the upward position, which simulates the action of a person standing from a sitting or lying down position. This test allows the doctor to measure the heart rate and blood pressure in such situations.

Supportive clinical features not required for diagnosis but make the diagnosis more likely include:

• Rapid worsening of movement symptoms within the first 3 years
• Serious balance problems and falls within 3 years
• Abnormal twisting of the neck (dystonia) made worse by levodopa
• Severe speech or swallowing problems within 3 years
• Unexplained reflex changes (Babinski sign)
• Jerky or irregular tremor
• Postural problems like head dropping forward (anterocollis), leaning to the side (laterocollis), or forward bending of the spine (camptocormia)
• Stridor (a harsh breathing sound), frequent deep sighs, cold and discolored hands and feet
• Erectile dysfunction starting before age 60
• Episodes of sudden laughing or crying without clear cause

Brain scans (neuroimaging) may show:

• Shrinking (atrophy) of areas like the putamen, pons, middle cerebellar peduncles, or cerebellum
• Loss of normal signal in the putamen on special MRI scans
• A special finding called the “hot cross bun” sign in the pons (brainstem)
• Changes in water movement (diffusivity) in certain brain areas

The diagnosis of MSA may be excluded if any of these are present:

• A strong and lasting response to Parkinson’s drugs
• Loss of smell without explanation
• Abnormal heart nerve imaging (MIBG scan)
• Early signs of dementia
• Early visual hallucinations (within the first 3 years)
• Eye movement problems typical of other diseases like PSP (difficulty moving eyes downward)
• Brain scans suggesting another disease (like multiple sclerosis, strokes, or other Parkinsonism types)
• A known medical condition that can cause similar symptoms

The diagnosis of MSA can be made in a person who meets the following criteria:

• Symptoms starting in an adult older than 30 years
• Symptoms getting worse over time (progressive)
• At least one autonomic symptom (like bladder or blood pressure problems)
• Parkinsonism and/or cerebellar symptoms with at least two features
• At least two supportive clinical features
• At least one MRI finding that supports the diagnosis
• No features that suggest another disease

MSA is a probable diagnosis (likely but not 100% certain) in these situations:

• Starts after age 30 and worsens over time
• At least two of the following:
  • Autonomic symptoms
  • Parkinsonism
  • Cerebellar symptoms
• At least one supportive clinical feature
• No features pointing to a different diagnosis

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Standard Therapies

Treatment

There is no specific treatment for MSA. Treatment is aimed at controlling the symptoms of the disease and maintaining quality of life.

Medications that are used to treat people with Parkinson’s disease, most notably levodopa (given in tablets of Sinemet), may also be prescribed for individuals with MSA. However, the effectiveness of such medications varies greatly among affected people. In many people, it is not effective, or it is only partially effective. About 1/3 of affected people improve with levodopa therapy. However, in most people, the effectiveness of this therapy decreases over time. In addition, these drugs must be used with caution because they may lower blood pressure.

Other drugs used to treat Parkinson’s disease may be used to treat individuals with MSA. These include dopamine agonists such as ropinirole (Requip) and pramipexole (Mirapexin) and an antiviral drug known as amantadine (Symmetrel).

If symptoms respond well to levodopa but pills are no longer enough, some patients might benefit from a special intestinal gel form of levodopa (delivered through a pump). In addition, physical, occupational and speech therapy are important:

• Physical therapy helps maintain walking ability and prevent falls.
• Occupational therapy helps people stay independent longer with everyday tasks.
• Speech therapy helps with swallowing and communication problems.

Early referral to speech therapy is important because swallowing problems can get worse over time.

For specific muscle issues (twisted neck muscles or eyelid spasms), botulinum toxin injections (Botox) may help but they need to be used carefully, especially if the person already has trouble swallowing.

Low blood pressure upon standing (orthostatic hypotension) may be treated by dietary increases in salt consumption, using a head-up tilt of the bed at night, by ingestion of 500mls water before exertion, rising slowly and avoiding heavy carbohydrate meals.

If non-drug methods do not sufficiently control orthostatic hypotension symptoms, the drug fludrocortisone (Florinef), a corticosteroid derivative, can be used. This drug must be used with caution and monitored carefully by a doctor for possible side effects.

The drug midodrine hydrochloride (ProAmatine) has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of low blood pressure sometimes associated with MSA.

Adrenergic drugs such as ephedrine may be used to treat low blood pressure. The drug L-threo-dihydroxyphenylserine (L-DOPS or L-threo-DOPS) can also be used to treat low blood pressure.

Blood pressure issues after meals (postprandial hypotension) can also happen. Simple changes like eating smaller meals and walking after eating can help. Some medications can be used in severe cases.

Bladder problems are usually managed with:

• Lifestyle tips like cutting down on caffeine and alcohol
• Medications like mirabegron (which helps relax the bladder and has fewer side effects than older drugs.
• Catheters for someone who can’t empty their bladder properly

Some older bladder medications (like oxybutynin) can cause confusion and are usually avoided.

Erectile dysfunction (problems getting or maintaining an erection) is common in men with MSA. Treatments are available and can be discussed with a doctor. Drugs such as sildenafil (Viagra), tadalfil (Cialis) or vardenafil (Levitra) may be used to treat impotence. In some people, these drugs may worsen low blood pressure and faintness.

Depression often occurs in people with MSA and can be treated with counseling, support for the family and sometimes medications.

Sleep studies are recommended to check breathing during sleep. Breathing problems, especially a high-pitched breathing noise called stridor that can be serious and sometimes life-threatening, are managed with CPAP machines (continuous positive airway pressure) at night to help with breathing.

When there is a risk of aspiration due to swallowing difficulty, a feeding tube may be inserted directly into the stomach (gastrostomy tube). A tracheostomy may be required for life-threatening breathing complications, daytime stridor, or abnormal vocal cord mobility. A tracheostomy is a procedure during which a tube is placed through a surgical opening in the throat to prevent breathing difficulties. In addition, affected individuals may be unable to walk unassisted or may require a wheelchair.

Sleep disorders like acting out dreams (REM sleep behavior disorder) are also common and can be treated with melatonin or clonazepam to make sleep safer.

Affected people need to be seen by several specialists including neurologists, physical therapists, speech therapists and mental health professionals. These specialists should work together as a team, in a coordinated way, for the best management.

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Clinical Trials and Studies

Research is ongoing for new treatments that could prevent alpha-synuclein clumps from forming or spreading and reduce inflammation in the brain.

The North American Prodromal Synucleinopathy (NAPS) Consortium on REM Sleep Behavior Disorder (RBD) has established a registry for individuals living with RBD, partners and family of someone diagnosed with RBD and those wanting to learn more about RBD. This information is used to identify study participants, assist care teams providing care to individuals with RBD and to study RBD treatments and outcomes.

Other efforts include the NINDS Biospecimen Exchange for Neurological Disorders (BioSEND), which houses biological samples such as blood or spinal fluid collected through NINDS-supported studies focused on biomarkers, and the NINDS Data Management Resource (DMR), which provides researchers with tools that allow for the collection and quality assurance of clinical data in a standardized format. NINDS also participates in Accelerating Medicines Partnership® Parkinson’s Disease (AMP PD)—a public-private collaboration focused on biomarker discovery to advance therapies for Parkinson’s disease and other synucleinopathies, including MSA.

Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. All studies receiving U.S. government funding, and some supported by private industry, are posted on this government web site.

For information about clinical trials being conducted at the NIH Clinical Center in Bethesda, MD, contact the NIH Patient Recruitment Office:

Tollfree: (800) 411-1222
TTY: (866) 411-1010
Email: [email protected]

Some current clinical trials also are posted on the following page on the NORD website:
https://rarediseases.org/living-with-a-rare-disease/find-clinical-trials/

For information about clinical trials sponsored by private sources, contact: www.centerwatch.com

For information about clinical trials conducted in Europe, contact: https://www.clinicaltrialsregister.eu/

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References

JOURNAL ARTICLES

Wenning GK, Stankovic I, Vignatelli L, et al. The Movement Disorder Society Criteria for the Diagnosis of Multiple System Atrophy. Mov Disord. 2022;37(6):1131-1148. doi:10.1002/mds.29005

Ahmed Z, Asi YT, Sailer A, et al. The neuropathology, pathophysiology and genetics of multiple system atrophy. Neuropathol Appl Neurobiol. 2012;38:4-24. https://www.ncbi.nlm.nih.gov/pubmed/22074330

Stemberger S, Scholz SW, Singleton AB, Wenning GK. Genetic players in multiple system atrophy: unfolding the nature of the beast. Neurobiol Aging. 2011;32:e4-14. https://www.ncbi.nlm.nih.gov/pubmed/21601954

Flabeau O, Meissner WG, Tison F. Multiple system atrophy: current and future approaches to management. Ther Adv Neurol Disord. 2010;3:249-263. https://www.ncbi.nlm.nih.gov/pubmed/21179616

Brown RG, Lacomblez L, Landwehrmeyer BG, et al. Cognitive impairment in patients with multiple system atrophy and progressive supranuclear palsy. Brain. 2010;133:2382-2393. https://www.ncbi.nlm.nih.gov/pubmed/20576697

Scholz SW, Houlden H, Schulte C, et al. SNCA variants are associated with increased risk for multiple system atrophy. Ann Neurol. 2009;65:610-614. https://www.ncbi.nlm.nih.gov/pubmed/19475667

Kao AW, Racine CA, Quitania LC, et al. Cognitive and neuropsychiatric profile of the synucleinopathies: Parkinson disease, dementia with Lewy bodies, and multiple system atrophy. Alzheimer Dis Assoc Discord. 2009;23:365-370. https://www.ncbi.nlm.nih.gov/pubmed/19935145/

Wenning GK, Stefanova N, Jellinger KA, Poewe W, Schlossmacher MG. Multiple system atrophy: a primary oligodendrogliopathy. Ann Neurol. 2008;64:239-246. https://www.ncbi.nlm.nih.gov/pubmed/18825660

Gilman S, Wenning GK, Low PA, et al. Second consensus statement on the diagnosis of multiple system atrophy. Neurology. 2008;71:670-676. https://www.ncbi.nlm.nih.gov/pubmed/18725592

Ozawa T, Healy DG, Abou-Sleiman PM, et al. The alpha-synuclein gene in multiple system atrophy. J Neurol Neurosurg Psychiatry. 2006;77:464-467. https://www.ncbi.nlm.nih.gov/pubmed/16543523

Poewe W, Wenning G. The differential diagnosis of Parkinson’s disease. Eur J Neurol. 2002;9:23-30. https://www.ncbi.nlm.nih.gov/pubmed/12464118

Osaki Y, Wenning GK, Daniel SE, et al. Do published criteria improve clinical diagnostic accuracy in multiple system atrophy? Neurology. 2002;59:1486-91. https://www.ncbi.nlm.nih.gov/pubmed/12455559

Parikh SM, Diedrich A, Biaggioni I, Robertson D. The nature of the autonomic dysfunction in multiple system atrophy. J Neurol Sci. 2002;200:1-10. https://www.ncbi.nlm.nih.gov/pubmed/12127669

Ghorayeb I, Yekhlef F, Chrysostome V, et al. Sleep disorders and their determinants in multiple system atrophy. J Neurol Neurosurg Psychiatry. 2002;72:798-800. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1737902/

Watanabe H, Saito Y, Terao S, et al. Progression and prognosis in multiple system atrophy: an analysis of 230 Japanese patients. Brain. 2002;125:1070-83. https://www.ncbi.nlm.nih.gov/pubmed/11960896

INTERNET

Multiple System Atrophy. Orphanet. Jan 2014. Available at: https://www.orpha.net/en/disease/detail/102 Accessed May 14, 2025.

Multiple system atrophy. National Institute of Neurological Disorders and Stroke. April 7, 2025. https://www.ninds.nih.gov/health-information/disorders/multiple-system-atrophy#toc-who-is-more-likely-to-get-multiple-system-atrophy  Accessed May 14, 2025.

Factor Sa & Esper Doss C. Multiple system atrophy: Clinical features and diagnosis. UpToDate. January 17, 2024. https://www.uptodate.com/contents/multiple-system-atrophy-clinical-features-and-diagnosis#H15 Accessed May 14, 2025.

Factor SA & Esper Doss C.  Multiple system atrophy: prognosis and treatment. UpToDate. December 6, 2024. https://www.uptodate.com/contents/multiple-system-atrophy-prognosis-and-treatment?topicRef=4890&source=see_link  Accessed May 14, 2025.

Diedrich A, Multiple System Atrophy. Medscape Reference. October 26, 2022.  Available at: https://emedicine.medscape.com/article/1154583-overview Accessed May 14, 2025.

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Programs & Resources

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RareCare^® Assistance Programs

NORD strives to open new assistance programs as funding allows. If we don’t have a program for you now, please continue to check back with us.

Additional Assistance Programs

MedicAlert Assistance Program

NORD and MedicAlert Foundation have teamed up on a new program to provide protection to rare disease patients in emergency situations.

Learn more https://rarediseases.org/patient-assistance-programs/medicalert-assistance-program/

Rare Disease Educational Support Program

Ensuring that patients and caregivers are armed with the tools they need to live their best lives while managing their rare condition is a vital part of NORD’s mission.

Learn more https://rarediseases.org/patient-assistance-programs/rare-disease-educational-support/

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This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder.

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Patient Organizations

Mission MSA

NORD Member

Email: [email protected]

Related Rare Diseases: Multiple System Atrophy

https://rarediseases.org/organizations/multiple-system-atrophy-coalition/

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CurePSP

NORD Member

Email: [email protected]

Related Rare Diseases: Progressive Supranuclear Palsy, Corticobasal Degeneration, Multiple System Atrophy ...

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National Ataxia Foundation

NORD Member

Email: [email protected]

Related Rare Diseases: Subacute Cerebellar Degeneration, Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation, Spinocerebellar Ataxia with Axonal Neuropathy, ...

https://rarediseases.org/organizations/national-ataxia-foundation/

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Defeat Multiple System Atrophy Alliance

NORD Member

Email: [email protected]

Related Rare Diseases: Multiple System Atrophy

https://rarediseases.org/organizations/defeat-msa-alliance/

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NIH/National Institute of Neurological Disorders and Stroke

Phone: 301-496-5751 Fax: 301-402-2186

Related Rare Diseases: MOG Antibody Disease, Aromatic L-Amino Acid Decarboxylase Deficiency, Miller Fisher Syndrome, ...

https://rarediseases.org/organizations/nih-national-institute-of-neurological-disorders-and-stroke/

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National Parkinson Foundation, Inc.

Phone: 305-243-6666 Email: [email protected] Fax: 305-243-6073

Related Rare Diseases: Olivopontocerebellar Atrophy, Multiple System Atrophy

https://rarediseases.org/organizations/national-parkinson-foundation-inc/

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Movement Disorder Society

Phone: 414-276-2145 Email: [email protected] Fax: 414-276-3349

Related Rare Diseases: ADCY5-Related Dyskinesia, Kufor Rakeb Syndrome, Primary Orthostatic Tremor, ...

https://rarediseases.org/organizations/movement-disorder-society/

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Autonomic Disorders Consortium

Email: [email protected]

Related Rare Diseases: Orthostatic Hypotension, Multiple System Atrophy

https://rarediseases.org/organizations/autonomic-disorders-consortium/

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Learn more about Patient Organization & Membership >

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More Information

The information provided on this page is for informational purposes only. The National Organization for Rare Disorders (NORD) does not endorse the information presented. The content has been gathered in partnership with the MONDO Disease Ontology. Please consult with a healthcare professional for medical advice and treatment.

GARD Disease Summary

The Genetic and Rare Diseases Information Center (GARD) has information and resources for patients, caregivers, and families that may be helpful before and after diagnosis of this condition. GARD is a program of the National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH).

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Orphanet

Orphanet has a summary about this condition that may include information on the diagnosis, care, and treatment as well as other resources. Some of the information and resources are available in languages other than English. The summary may include medical terms, so we encourage you to share and discuss this information with your doctor. Orphanet is the French National Institute for Health and Medical Research and the Health Programme of the European Union.

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