Overview
Rare genetic autonomic nervous system disorder (Orphanet code 434786) refers to a group of uncommon inherited conditions that affect the autonomic nervous system — the part of your nervous system that controls automatic body functions you don't consciously think about. These include heart rate, blood pressure, sweating, digestion, bladder function, and temperature regulation. Because the autonomic nervous system touches so many parts of the body, symptoms can be wide-ranging and affect multiple organ systems. People with these disorders may experience problems such as fainting or dizziness when standing up (due to drops in blood pressure), abnormal sweating (too much or too little), digestive difficulties like nausea or constipation, trouble controlling body temperature, and irregular heart rhythms. The severity can vary greatly from person to person, even within the same family. Treatment is generally focused on managing symptoms, as there is currently no cure for most genetic autonomic disorders. This may include medications to raise blood pressure, dietary changes such as increased salt and fluid intake, physical countermaneuvers, and careful monitoring by a team of specialists. Early diagnosis through genetic testing can help guide treatment and allow families to plan appropriately. Research into these conditions is ongoing, and new therapies are being explored.
Key symptoms:
Dizziness or fainting when standing upAbnormal blood pressure changesRapid or irregular heartbeatExcessive or absent sweatingDifficulty regulating body temperatureChronic constipation or digestive problemsNausea or vomitingBladder control problemsDry eyes or dry mouthBlurred visionFatigue and low energyExercise intoleranceNumbness or tingling in hands and feetDifficulty swallowing
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Rare genetic autonomic nervous system disorder.
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Specialists
View all specialists →No specialists are currently listed for Rare genetic autonomic nervous system disorder.
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 genetic autonomic nervous system disorder.
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.What specific type of genetic autonomic disorder do I or my child have, and which gene is affected?,What symptoms should I watch for that would require emergency care?,Are there medications that can help manage blood pressure drops or other symptoms?,Should other family members be tested for this condition?,Are there any clinical trials or new treatments being studied for this condition?,What lifestyle changes can help manage symptoms day to day?,How often should I have follow-up testing to monitor how the condition is progressing?
Common questions about Rare genetic autonomic nervous system disorder
What is Rare genetic autonomic nervous system disorder?
Rare genetic autonomic nervous system disorder (Orphanet code 434786) refers to a group of uncommon inherited conditions that affect the autonomic nervous system — the part of your nervous system that controls automatic body functions you don't consciously think about. These include heart rate, blood pressure, sweating, digestion, bladder function, and temperature regulation. Because the autonomic nervous system touches so many parts of the body, symptoms can be wide-ranging and affect multiple organ systems. People with these disorders may experience problems such as fainting or dizziness wh