Cryptorchidism-arachnodactyly-intellectual disability syndrome

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ORPHA:1548Q87.8
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Overview

Cryptorchidism-arachnodactyly-intellectual disability syndrome is an extremely rare genetic condition that affects multiple body systems. The name describes its three main features: cryptorchidism (undescended testicles in males), arachnodactyly (unusually long, slender fingers and toes that resemble spider legs), and intellectual disability. This syndrome was first described in a small number of patients and remains very poorly understood due to the limited number of reported cases in the medical literature. Affected individuals typically show signs from birth or early childhood. In addition to the three hallmark features, patients may have other physical differences such as unusual facial features, growth problems, and skeletal abnormalities. The intellectual disability can range from mild to moderate, affecting learning, speech development, and daily functioning. Because this condition is so rare, there is no specific cure or targeted treatment. Management focuses on addressing individual symptoms. Undescended testicles may require surgical correction (orchiopexy). Children benefit from early intervention programs including speech therapy, occupational therapy, and special education support. Regular follow-up with multiple specialists is important to monitor development and address any new concerns as the child grows.

Also known as:

Key symptoms:

Undescended testicles in malesLong, slender fingers and toesIntellectual disabilityDelayed speech and language developmentLearning difficultiesUnusual facial featuresGrowth delaysJoint looseness or hypermobilitySkeletal abnormalitiesDelayed motor milestonesLow muscle tone

Clinical phenotype terms (17)— hover any for plain English
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Cryptorchidism-arachnodactyly-intellectual disability syndrome.

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No actively recruiting trials found for Cryptorchidism-arachnodactyly-intellectual disability syndrome at this time.

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No specialists are currently listed for Cryptorchidism-arachnodactyly-intellectual disability syndrome.

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 Cryptorchidism-arachnodactyly-intellectual disability syndrome.

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Community

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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Family & Caregiver Grants

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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 is the severity of my child's intellectual disability, and what therapies would help the most?,When should surgery for undescended testicles be performed, and what are the risks?,Should we pursue genetic testing such as whole exome sequencing to look for a specific cause?,What early intervention services should we start right away?,How will this condition affect my child's ability to attend school and learn?,Are there any other specialists we should see regularly?,What is the chance that future children could also be affected?

Common questions about Cryptorchidism-arachnodactyly-intellectual disability syndrome

What is Cryptorchidism-arachnodactyly-intellectual disability syndrome?

Cryptorchidism-arachnodactyly-intellectual disability syndrome is an extremely rare genetic condition that affects multiple body systems. The name describes its three main features: cryptorchidism (undescended testicles in males), arachnodactyly (unusually long, slender fingers and toes that resemble spider legs), and intellectual disability. This syndrome was first described in a small number of patients and remains very poorly understood due to the limited number of reported cases in the medical literature. Affected individuals typically show signs from birth or early childhood. In addition

How is Cryptorchidism-arachnodactyly-intellectual disability syndrome inherited?

Cryptorchidism-arachnodactyly-intellectual disability syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Cryptorchidism-arachnodactyly-intellectual disability syndrome typically begin?

Typical onset of Cryptorchidism-arachnodactyly-intellectual disability syndrome is neonatal. Age of onset can vary across affected individuals.