Overview
FLOTCH syndrome is an extremely rare genetic condition whose name stands for Finger-Like Osteochondroma of the Third and Fourth Toes with Congenital Hallux varus. This syndrome primarily affects the feet and toes. People with FLOTCH syndrome are born with an inward-turning big toe (hallux varus) and develop bony growths called osteochondromas on the third and fourth toes. These growths look like extra finger-like projections of bone and cartilage. The condition may also involve nail abnormalities, which is reflected in its ICD-10 classification under nail disorders. FLOTCH syndrome is present from birth, and the bony changes in the toes can affect how a person walks and wears shoes. Because this condition is so rare, there is limited published medical literature about it. Treatment is generally focused on managing symptoms, which may include surgical removal of the bony growths if they cause pain or difficulty with footwear, and orthopedic management of the hallux varus. There is no known cure, and management is tailored to each individual's specific needs. Genetic counseling is recommended for affected families to understand the inheritance pattern and recurrence risk.
Key symptoms:
Inward-turning big toe present from birth (hallux varus)Bony growths on the third and fourth toesFinger-like projections of bone and cartilage on toesNail abnormalitiesDifficulty fitting into shoesFoot pain or discomfort when walkingAbnormal toe alignmentPossible changes in gait or walking pattern
Clinical phenotype terms (9)— 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 FLOTCH syndrome.
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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 FLOTCH syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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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.How will this condition affect my child's ability to walk and be active?,Will the bony growths on the toes continue to grow, and when might surgery be needed?,What type of shoes or orthotics would be best for managing this condition?,Is genetic testing available to confirm the diagnosis or help with family planning?,How often should we schedule follow-up appointments to monitor the condition?,Are there any activities my child should avoid to prevent injury to the feet?,What are the risks and benefits of surgical correction for the big toe or the bony growths?
Common questions about FLOTCH syndrome
What is FLOTCH syndrome?
FLOTCH syndrome is an extremely rare genetic condition whose name stands for Finger-Like Osteochondroma of the Third and Fourth Toes with Congenital Hallux varus. This syndrome primarily affects the feet and toes. People with FLOTCH syndrome are born with an inward-turning big toe (hallux varus) and develop bony growths called osteochondromas on the third and fourth toes. These growths look like extra finger-like projections of bone and cartilage. The condition may also involve nail abnormalities, which is reflected in its ICD-10 classification under nail disorders. FLOTCH syndrome is present
How is FLOTCH syndrome inherited?
FLOTCH syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does FLOTCH syndrome typically begin?
Typical onset of FLOTCH syndrome is neonatal. Age of onset can vary across affected individuals.
Which specialists treat FLOTCH syndrome?
3 specialists and care centers treating FLOTCH syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.