Overview
Robinow-like syndrome (also sometimes called Robinow-like syndrome or costovertebral dysplasia with mesomelic limb shortening) is an extremely rare genetic condition that shares many features with classic Robinow syndrome but has distinct differences that set it apart. The condition primarily affects the development of bones and facial structures. People with this syndrome typically have a characteristic facial appearance that may include a broad forehead, widely spaced eyes, a short upturned nose, and a flat midface — features sometimes described as resembling a fetal face. Limb abnormalities are also common, particularly shortening of the forearms and lower legs (called mesomelia). Spine and rib abnormalities, such as fused or malformed vertebrae, may also occur. Some individuals may have genital abnormalities, short stature, and dental problems. Because this condition is so rare, the treatment landscape is largely supportive and symptom-based. There is no cure, and management focuses on orthopedic care for bone and spine issues, monitoring growth, and addressing any other complications as they arise. A team of specialists is usually needed to provide comprehensive care. Early diagnosis through clinical evaluation and genetic testing can help families plan appropriate medical follow-up and interventions.
Also known as:
Key symptoms:
Short statureShortened forearms and lower legsBroad foreheadWidely spaced eyesFlat or underdeveloped midfaceShort upturned noseSpine abnormalities such as fused vertebraeRib malformationsGenital abnormalities in malesDental crowding or misalignmentBroad thumbs or toesDelayed bone developmentNail abnormalities
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
10 eventsDRONABINOL: New indication approved
DRONABINOL: New indication approved
DRONABINOL: New indication approved
DRONABINOL: New indication approved
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Robinow-like syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Robinow-like syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Robinow-like syndrome.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Robinow-like syndrome.
Community
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Start the conversation →Latest news about Robinow-like 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 specific type of Robinow or Robinow-like syndrome does my child have, and is the genetic cause known?,What skeletal complications should we watch for as my child grows?,Is genetic testing recommended for other family members?,Would growth hormone therapy be appropriate in our case?,What orthopedic interventions might be needed, and when?,Are there any clinical trials or research studies we could participate in?,What specialists should be part of our care team?
Common questions about Robinow-like syndrome
What is Robinow-like syndrome?
Robinow-like syndrome (also sometimes called Robinow-like syndrome or costovertebral dysplasia with mesomelic limb shortening) is an extremely rare genetic condition that shares many features with classic Robinow syndrome but has distinct differences that set it apart. The condition primarily affects the development of bones and facial structures. People with this syndrome typically have a characteristic facial appearance that may include a broad forehead, widely spaced eyes, a short upturned nose, and a flat midface — features sometimes described as resembling a fetal face. Limb abnormalities
At what age does Robinow-like syndrome typically begin?
Typical onset of Robinow-like syndrome is neonatal. Age of onset can vary across affected individuals.