Tick-borne encephalitis

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40Specialists8Treatment centers

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Overview

Tick-borne encephalitis (TBE) is a viral infection of the brain and surrounding tissues caused by the tick-borne encephalitis virus (TBEV). It is spread mainly through the bite of infected ticks, particularly the Ixodes species. In some cases, people can also get it by drinking unpasteurized milk from infected animals like goats or cows. The virus attacks the central nervous system, which includes the brain and spinal cord, causing inflammation that can lead to serious neurological problems. The illness often happens in two stages. The first stage feels like a typical flu, with fever, headache, muscle aches, and tiredness. Many people recover at this point. However, in about one-third of cases, the illness moves into a second, more serious stage where the virus reaches the brain. This can cause encephalitis (brain inflammation), meningitis (inflammation of the membranes around the brain), or both. Symptoms in this stage include severe headache, high fever, confusion, difficulty with balance and coordination, and in serious cases, paralysis or seizures. There is no specific antiviral drug to treat TBE once someone is infected. Treatment focuses on managing symptoms and supporting the body through the illness, often in a hospital setting. The good news is that a safe and effective vaccine exists to prevent TBE, and it is widely recommended for people living in or traveling to high-risk areas. Most people recover, but some are left with lasting neurological effects. TBE is also sometimes called Central European encephalitis or Russian spring-summer encephalitis, depending on the virus subtype.

Also known as:

Key symptoms:

FeverSevere headacheMuscle aches and painsExtreme tiredness and fatigueNausea and vomitingStiff neckConfusion or disorientationDifficulty with balance and coordinationSensitivity to lightSeizuresWeakness or paralysis of limbsDifficulty speaking or swallowingMemory and concentration problemsTremors or involuntary movementsLoss of consciousness in severe cases

Clinical phenotype terms (50)— hover any for plain English
CSF pleocytosisHP:0012229Abnormal circulating cytokine concentrationHP:0011112ViremiaHP:0020071Personality changesHP:0000751
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

4 events
Dec 2025TBE Zone 2 PMS in Japan

W.L.Gore & Associates

TrialRECRUITING
May 2025Effects of TBE VS GE on Scapular Dyskinesia in Male Cricketers.

Riphah International University — NA

TrialNOT YET RECRUITING
Sep 2016Evaluation of the GORE® TBE Device in the Treatment of Lesions of the Aortic Arch and Descending Thoracic Aorta, Zone 2

W.L.Gore & Associates — NA

TrialACTIVE NOT RECRUITING
Aug 2016Evaluation of the GORE® TBE Device in the Treatment of Lesions of the Aortic Arch and Descending Thoracic Aorta, Zone 0/1

W.L.Gore & Associates — NA

TrialACTIVE NOT RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Tick-borne encephalitis.

View clinical trials →

No actively recruiting trials found for Tick-borne encephalitis at this time.

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

Search ClinicalTrials.gov ↗Join the Tick-borne encephalitis community →

Specialists

Showing 25 of 40View all specialists →
RM
Ryszard Konior, MD
Specialist
PI on 3 active trials
HP
Hege Kersten, PhD
Specialist
PI on 1 active trial
BI
Baxter Bioscience Investigator
Specialist
PI on 1 active trial1 Tick-borne encephalitis publication
KM
Krystnyna Jurowska, MD
Specialist
PI on 1 active trial
EM
Eva-Maria Pöllabauer, MD
Specialist
PI on 1 active trial
DR
Daniel Ruzek
Specialist
2 Tick-borne encephalitis publications
SG
Sara Gredmark-Russ
Specialist
2 Tick-borne encephalitis publications
JK
Jonas Klingström
Specialist
2 Tick-borne encephalitis publications
DR
Daniel Růžek
Specialist
2 Tick-borne encephalitis publications
GC
Gabriele Chiffi
Specialist
2 Tick-borne encephalitis publications
SL
Stephen L Leib
FELTON, CA
Specialist
2 Tick-borne encephalitis publications
JA
Judith H Aberle
Specialist
2 Tick-borne encephalitis publications
KS
Karin Stiasny
Specialist
2 Tick-borne encephalitis publications
SR
Simon Raffl
Specialist
2 Tick-borne encephalitis publications
DG
Denis Grandgirard
Specialist
2 Tick-borne encephalitis publications
FA
Frederick J Angulo
SAN ANTONIO, TX
Specialist
3 Tick-borne encephalitis publications
BI
Baxter BioScience Investigator
Specialist
PI on 7 active trials
AM
Anna Durbin, MD
BALTIMORE, MD
Specialist
PI on 31 active trials1 Tick-borne encephalitis publication
RK
Ryszard Konior
Specialist
PI on 1 active trial1 Tick-borne encephalitis publication
LM
lars rombo, MD
Specialist
PI on 4 active trials1 Tick-borne encephalitis publication

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 Tick-borne encephalitis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Tick-borne encephalitis

Disease timeline:

New recruiting trial: TBE Zone 2 PMS in Japan

A new clinical trial is recruiting patients for Tick-borne encephalitis

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 stage of TBE do I have, and how severe is my infection based on my test results?,What symptoms should prompt me to go to the emergency room immediately?,How long is my recovery likely to take, and what does rehabilitation look like for me?,Are there any lasting neurological effects I should watch for, and how will they be monitored?,Should my family members or travel companions be vaccinated, and which vaccine is recommended?,Are there any clinical trials or new treatments for TBE that I might be eligible for?,What support services are available to help me return to work or school after recovery?

Common questions about Tick-borne encephalitis

What is Tick-borne encephalitis?

Tick-borne encephalitis (TBE) is a viral infection of the brain and surrounding tissues caused by the tick-borne encephalitis virus (TBEV). It is spread mainly through the bite of infected ticks, particularly the Ixodes species. In some cases, people can also get it by drinking unpasteurized milk from infected animals like goats or cows. The virus attacks the central nervous system, which includes the brain and spinal cord, causing inflammation that can lead to serious neurological problems. The illness often happens in two stages. The first stage feels like a typical flu, with fever, headach

How is Tick-borne encephalitis inherited?

Tick-borne encephalitis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

Which specialists treat Tick-borne encephalitis?

25 specialists and care centers treating Tick-borne encephalitis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.