TELO2-related intellectual disability-neurodevelopmental disorder

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ORPHA:488642OMIM:616954Q87.8
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8Treatment centers

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Overview

TELO2-related intellectual disability-neurodevelopmental disorder is a rare genetic condition caused by changes (variants) in the TELO2 gene. This gene plays an important role in helping cells grow, divide, and repair themselves properly. When the TELO2 gene does not work as it should, it affects the development of the brain and nervous system, leading to a range of challenges that are usually noticed in infancy or early childhood. Children with this condition typically have intellectual disability, which means they may learn more slowly and need extra support at school and at home. Many also have delayed development in areas like talking, walking, and social skills. Some children have features that affect how they look, such as differences in facial appearance. Seizures, movement problems, and behavioral challenges are also common. The condition can affect multiple body systems, making it a complex disorder that requires care from several different types of specialists. There is currently no cure for TELO2-related intellectual disability-neurodevelopmental disorder. Treatment focuses on managing symptoms and supporting development. This includes therapies like speech therapy, physical therapy, and occupational therapy, as well as medications to control seizures if they occur. Early intervention and ongoing support can make a meaningful difference in quality of life for affected individuals and their families.

Also known as:

Key symptoms:

Intellectual disability (difficulty learning and thinking)Delayed speech and language developmentDelayed motor milestones such as sitting and walkingSeizuresDistinctive facial featuresShort statureBehavioral challenges such as hyperactivity or anxietyPoor muscle tone (hypotonia)Feeding difficulties in infancyAutistic features or social communication difficultiesMovement coordination problems

Clinical phenotype terms (50)— hover any for plain English
Primary microcephalyHP:00114514-5 toe syndactylyHP:0004692Abnormal morphology of the great vesselsHP:0030962
Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for TELO2-related intellectual disability-neurodevelopmental disorder.

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No actively recruiting trials found for TELO2-related intellectual disability-neurodevelopmental disorder at this time.

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No specialists are currently listed for TELO2-related intellectual disability-neurodevelopmental disorder.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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 TELO2-related intellectual disability-neurodevelopmental disorder.

Search all travel grants →NORD Financial Assistance ↗

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 change was found in the TELO2 gene, and what does it mean for my child's health?,What therapies should we start right away, and how often should my child receive them?,What signs of seizures should I watch for, and what should I do if one happens?,Are there any other health problems we should screen for related to this condition?,Should other family members be tested for this genetic change?,Are there any clinical trials or research studies our family could participate in?,What educational supports and services should we ask for at school?

Common questions about TELO2-related intellectual disability-neurodevelopmental disorder

What is TELO2-related intellectual disability-neurodevelopmental disorder?

TELO2-related intellectual disability-neurodevelopmental disorder is a rare genetic condition caused by changes (variants) in the TELO2 gene. This gene plays an important role in helping cells grow, divide, and repair themselves properly. When the TELO2 gene does not work as it should, it affects the development of the brain and nervous system, leading to a range of challenges that are usually noticed in infancy or early childhood. Children with this condition typically have intellectual disability, which means they may learn more slowly and need extra support at school and at home. Many also

How is TELO2-related intellectual disability-neurodevelopmental disorder inherited?

TELO2-related intellectual disability-neurodevelopmental disorder follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does TELO2-related intellectual disability-neurodevelopmental disorder typically begin?

Typical onset of TELO2-related intellectual disability-neurodevelopmental disorder is infantile. Age of onset can vary across affected individuals.