Digital anomalies-intellectual disability-short stature syndrome

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:352487
Who is this for?
Show terms as
8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Digital anomalies-intellectual disability-short stature syndrome is an extremely rare genetic condition that affects several parts of the body. The name describes its three main features: digital anomalies (differences in the fingers and toes), intellectual disability (difficulty with learning and thinking skills), and short stature (being significantly shorter than expected for age and sex). Children born with this syndrome may have unusually shaped or sized fingers and toes, which can include shortened fingers (brachydactyly), curved fingers (clinodactyly), or other structural differences in the hands and feet. Intellectual disability can range from mild to moderate, affecting a child's ability to learn, communicate, and develop everyday skills at the expected pace. Short stature is typically present from early childhood and may become more noticeable as the child grows. Because this syndrome is so rare, there is very limited information available about it in the medical literature. There is currently no cure for this condition. Treatment focuses on managing individual symptoms and supporting the child's development through therapies such as physical therapy, occupational therapy, speech therapy, and special education services. Regular follow-up with multiple specialists is important to monitor growth, development, and any associated health concerns.

Key symptoms:

Short stature or slow growthIntellectual disability or learning difficultiesAbnormally shaped fingers or toesShort fingers (brachydactyly)Curved fingers (clinodactyly)Delayed speech and language developmentDelayed motor milestones like walkingUnusual facial featuresDifficulty with fine motor skillsBehavioral challenges

Inheritance

Autosomal dominant

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

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Digital anomalies-intellectual disability-short stature syndrome.

View clinical trials →

No actively recruiting trials found for Digital anomalies-intellectual disability-short stature syndrome at this time.

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

Search ClinicalTrials.gov ↗Join the Digital anomalies-intellectual disability-short stature syndrome community →

No specialists are currently listed for Digital anomalies-intellectual disability-short stature 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 Digital anomalies-intellectual disability-short stature syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Digital anomalies-intellectual disability-short stature syndromeForum →

No community posts yet. Be the first to share your experience with Digital anomalies-intellectual disability-short stature syndrome.

Start the conversation →

Latest news about Digital anomalies-intellectual disability-short stature syndrome

No recent news articles for Digital anomalies-intellectual disability-short stature syndrome.

Follow this condition to be notified when news becomes available.

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 tests can help confirm this diagnosis?,Should we pursue genetic testing such as whole exome sequencing?,What therapies would benefit my child the most right now?,Is growth hormone therapy an option for my child's short stature?,Will my child's hand or foot differences need surgery?,What educational supports should we put in place?,Is there a chance this condition could affect future children in our family?

Common questions about Digital anomalies-intellectual disability-short stature syndrome

What is Digital anomalies-intellectual disability-short stature syndrome?

Digital anomalies-intellectual disability-short stature syndrome is an extremely rare genetic condition that affects several parts of the body. The name describes its three main features: digital anomalies (differences in the fingers and toes), intellectual disability (difficulty with learning and thinking skills), and short stature (being significantly shorter than expected for age and sex). Children born with this syndrome may have unusually shaped or sized fingers and toes, which can include shortened fingers (brachydactyly), curved fingers (clinodactyly), or other structural differences in

How is Digital anomalies-intellectual disability-short stature syndrome inherited?

Digital anomalies-intellectual disability-short stature syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Digital anomalies-intellectual disability-short stature syndrome typically begin?

Typical onset of Digital anomalies-intellectual disability-short stature syndrome is neonatal. Age of onset can vary across affected individuals.