Overview
Fatal Familial Insomnia (FFI) is an extremely rare and serious brain disease that belongs to a group of conditions called prion diseases. It is also sometimes called Fatal Familial Insomnia Syndrome. The disease causes a specific part of the brain called the thalamus to break down over time. The thalamus acts like a relay station in the brain, helping to control sleep, body temperature, heart rate, and blood pressure. When it stops working properly, the body loses its ability to sleep — and this loss of sleep becomes total and permanent. The most striking symptom is a complete inability to sleep, which gets worse over time. This is not ordinary insomnia. People with FFI cannot fall asleep at all, even when they are exhausted. As the disease progresses, people may experience hallucinations, confusion, memory problems, and loss of coordination. The body also loses control of automatic functions like sweating, heart rate, and blood pressure. Unfortunately, FFI is a fatal disease. There is currently no cure and no treatment that stops the disease from progressing. Supportive care can help manage some symptoms and improve comfort. Researchers are actively studying potential treatments, including drugs that target the abnormal prion protein responsible for the disease. This condition is caused by a mutation in the PRNP gene and is usually inherited, though a very rare non-inherited form called Sporadic Fatal Insomnia also exists.
Key symptoms:
Complete inability to sleep (total insomnia)Vivid hallucinations or dream-like states while awakeConfusion and disorientationMemory lossLoss of coordination and balanceUncontrolled sweatingRapid or irregular heart rateHigh blood pressureDifficulty swallowingWeight lossMuscle stiffness or jerking movementsPersonality and mood changesDifficulty speaking clearly
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Rare sleep disorder.
View clinical trials →Clinical Trials
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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 sleep 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.Is genetic testing available for my other family members, and should they be tested?,Are there any clinical trials or experimental treatments I or my family member might qualify for?,What symptoms should prompt an emergency room visit?,How can palliative care be involved early to help manage symptoms?,What support services are available for caregivers and family members?,How quickly is this disease likely to progress, and what stages should we prepare for?,Are there any prion disease centers of excellence where we can get specialized care?
Common questions about Rare sleep disorder
What is Rare sleep disorder?
Fatal Familial Insomnia (FFI) is an extremely rare and serious brain disease that belongs to a group of conditions called prion diseases. It is also sometimes called Fatal Familial Insomnia Syndrome. The disease causes a specific part of the brain called the thalamus to break down over time. The thalamus acts like a relay station in the brain, helping to control sleep, body temperature, heart rate, and blood pressure. When it stops working properly, the body loses its ability to sleep — and this loss of sleep becomes total and permanent. The most striking symptom is a complete inability to sl
How is Rare sleep disorder inherited?
Rare sleep disorder follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Rare sleep disorder typically begin?
Typical onset of Rare sleep disorder is adult. Age of onset can vary across affected individuals.
Which specialists treat Rare sleep disorder?
6 specialists and care centers treating Rare sleep disorder are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.