Overview
Reunion Island Larsen-like syndrome is an extremely rare genetic condition first described in families from Reunion Island, a French overseas territory in the Indian Ocean. This syndrome shares features with classic Larsen syndrome but has distinct characteristics that set it apart. It primarily affects the skeletal system and connective tissues of the body. People with this condition typically have joint hypermobility (unusually loose and flexible joints), multiple joint dislocations that may be present at birth, and distinctive facial features. Skeletal abnormalities can include short stature, flat facial appearance, and abnormalities of the spine. The condition may also involve hearing loss and other developmental concerns. Because this syndrome is so rare, the treatment landscape is limited and mainly focuses on managing symptoms. Orthopedic care is often needed to address joint dislocations and skeletal problems. Physical therapy can help strengthen muscles around loose joints. Surgery may be required for severe joint or spinal issues. There is currently no cure or disease-specific therapy available. Management requires a team of specialists working together to address the various body systems that may be affected.
Also known as:
Key symptoms:
Joint hypermobility (unusually loose joints)Multiple joint dislocations present at birthFlat facial appearanceShort statureSpinal abnormalitiesProminent foreheadWide-set eyesDepressed nasal bridge (flat nose bridge)Hearing lossClubfoot or foot deformitiesDelayed motor developmentAbnormal shape of the bones
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Reunion Island Larsen-like syndrome.
View clinical trials →Clinical Trials
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Specialists
View all specialists →No specialists are currently listed for Reunion Island Larsen-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 Reunion Island Larsen-like syndrome.
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.How severe is my child's condition compared to other known cases?,What joint protection strategies should we follow in daily life?,How often should we schedule orthopedic and hearing check-ups?,Are there specific physical activities that are safe or should be avoided?,Should we pursue genetic testing, and what might it tell us?,What signs of complications should prompt an urgent visit?,Are there any research studies or registries we should consider joining?
Common questions about Reunion Island Larsen-like syndrome
What is Reunion Island Larsen-like syndrome?
Reunion Island Larsen-like syndrome is an extremely rare genetic condition first described in families from Reunion Island, a French overseas territory in the Indian Ocean. This syndrome shares features with classic Larsen syndrome but has distinct characteristics that set it apart. It primarily affects the skeletal system and connective tissues of the body. People with this condition typically have joint hypermobility (unusually loose and flexible joints), multiple joint dislocations that may be present at birth, and distinctive facial features. Skeletal abnormalities can include short statu
How is Reunion Island Larsen-like syndrome inherited?
Reunion Island Larsen-like syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Reunion Island Larsen-like syndrome typically begin?
Typical onset of Reunion Island Larsen-like syndrome is neonatal. Age of onset can vary across affected individuals.