Ossification anomalies-psychomotor developmental delay syndrome

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ORPHA:73230Q79.8
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Overview

Ossification anomalies-psychomotor developmental delay syndrome (also known by its Orphanet code ORPHA:73230) is a very rare condition that affects how bones form and how the brain and body develop together. 'Ossification' refers to the process of bone formation, and in this syndrome, that process does not happen normally. This can lead to bones that are shaped differently, form too early, or are missing in certain areas. At the same time, children with this condition often experience delays in reaching developmental milestones — such as sitting, walking, and talking — which is what 'psychomotor developmental delay' means. The syndrome affects multiple body systems, including the skeleton and the nervous system. Children may have unusual bone structures visible on X-rays, along with intellectual disability and motor difficulties. Because this condition is extremely rare, much of what is known comes from a very small number of reported cases. There is currently no cure, and treatment focuses on managing symptoms, supporting development through therapy, and monitoring bone health. Early intervention with physical therapy, occupational therapy, and speech therapy can make a meaningful difference in a child's quality of life.

Key symptoms:

Delayed development of motor skills such as sitting, crawling, and walkingIntellectual disability or learning difficultiesAbnormal bone formation or bone shape seen on X-raysUnusual facial featuresShort stature or slow growthMuscle weakness or low muscle toneDelayed or absent speech developmentJoint problems or limited joint movement

Clinical phenotype terms (36)— hover any for plain English
Shallow orbitsHP:0000586Thin ribsHP:0000883Recurrent aspiration pneumoniaHP:0002100Slender long boneHP:0003100Decreased muscle massHP:0003199Penile hypospadiasHP:0003244Short 5th fingerHP:0009237Triangular shaped distal phalanges of the handHP:0009875Hepatic hemangiomaHP:0031207Clubbing of fingersHP:0100759
Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Ossification anomalies-psychomotor developmental delay syndrome.

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No actively recruiting trials found for Ossification anomalies-psychomotor developmental delay syndrome at this time.

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Search ClinicalTrials.gov ↗Join the Ossification anomalies-psychomotor developmental delay syndrome community →

No specialists are currently listed for Ossification anomalies-psychomotor developmental delay 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 Ossification anomalies-psychomotor developmental delay syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Ossification anomalies-psychomotor developmental delay syndrome

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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 genetic tests should we do to try to find the cause of my child's condition?,Which therapies — physical, occupational, or speech — should we start first, and how often?,How often should my child's bones be monitored, and what imaging is recommended?,Are there any clinical trials or research studies we could participate in?,What signs should prompt us to seek emergency care?,How can we connect with other families affected by this condition?,What educational supports should we request for my child at school?

Common questions about Ossification anomalies-psychomotor developmental delay syndrome

What is Ossification anomalies-psychomotor developmental delay syndrome?

Ossification anomalies-psychomotor developmental delay syndrome (also known by its Orphanet code ORPHA:73230) is a very rare condition that affects how bones form and how the brain and body develop together. 'Ossification' refers to the process of bone formation, and in this syndrome, that process does not happen normally. This can lead to bones that are shaped differently, form too early, or are missing in certain areas. At the same time, children with this condition often experience delays in reaching developmental milestones — such as sitting, walking, and talking — which is what 'psychomot

At what age does Ossification anomalies-psychomotor developmental delay syndrome typically begin?

Typical onset of Ossification anomalies-psychomotor developmental delay syndrome is neonatal. Age of onset can vary across affected individuals.