Overview
Feingold syndrome type 1 (also called oculodigitoesophagoduodenal syndrome or ODED syndrome) is a rare genetic condition that affects several parts of the body. It is caused by changes (mutations) in the MYCN gene, which plays an important role in how the body develops before birth. People with this condition are typically born with certain physical features, including short fingers and toes (brachydactyly), especially shortening of the second and fifth fingers, and the fingers or toes may be joined together (syndactyly). One of the most medically significant features is atresia (blockage) of parts of the digestive tract, most commonly the esophagus (the tube connecting the mouth to the stomach) or the duodenum (the first part of the small intestine). These blockages often require surgery shortly after birth. Many individuals with Feingold syndrome type 1 also have a smaller-than-average head size (microcephaly) and mild to moderate learning difficulties or intellectual disability, though intelligence can be normal. Some people may have facial features such as a short space between the nose and upper lip, small ears, or a narrow opening of the eyelids. Hearing loss and kidney abnormalities can also occur. The severity of symptoms varies widely, even among members of the same family. Treatment focuses on managing specific symptoms, particularly surgical correction of digestive tract blockages in newborns, and supportive therapies for learning and developmental needs. With appropriate medical care, many individuals lead fulfilling lives.
Also known as:
Key symptoms:
Short fingers and toes (brachydactyly)Fingers or toes that are joined together (syndactyly)Blockage of the esophagus (esophageal atresia)Blockage of the duodenum (duodenal atresia)Smaller-than-average head size (microcephaly)Mild to moderate learning difficultiesShort statureSmall earsNarrow eye openingsShort space between nose and upper lipHearing lossKidney abnormalitiesFeeding difficulties in infancySpeech delays
Clinical phenotype terms (35)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Feingold syndrome type 1.
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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 Feingold syndrome type 1.
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.Does my child have any digestive tract blockages that need surgery?,How will we monitor my child's development and learning over time?,Should my child have hearing and kidney tests, and how often?,What therapies (speech, occupational, educational) should we start and when?,What is the chance of passing this condition to future children?,Are there any clinical trials or research studies we should know about?,What specialists should be part of my child's care team?
Common questions about Feingold syndrome type 1
What is Feingold syndrome type 1?
Feingold syndrome type 1 (also called oculodigitoesophagoduodenal syndrome or ODED syndrome) is a rare genetic condition that affects several parts of the body. It is caused by changes (mutations) in the MYCN gene, which plays an important role in how the body develops before birth. People with this condition are typically born with certain physical features, including short fingers and toes (brachydactyly), especially shortening of the second and fifth fingers, and the fingers or toes may be joined together (syndactyly). One of the most medically significant features is atresia (blockage) of
How is Feingold syndrome type 1 inherited?
Feingold syndrome type 1 follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Feingold syndrome type 1 typically begin?
Typical onset of Feingold syndrome type 1 is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Feingold syndrome type 1?
15 specialists and care centers treating Feingold syndrome type 1 are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.