Fukuda-Miyanomae-Nakata syndrome

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ORPHA:2060
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Overview

Fukuda-Miyanomae-Nakata syndrome is an extremely rare genetic condition that has been described in only a handful of patients in the medical literature. This syndrome is also sometimes referred to by its Orphanet designation (ORPHA:2060). It is characterized by a combination of skeletal abnormalities, intellectual disability, and distinctive facial features. Affected individuals may show short stature, abnormalities of the bones (particularly the spine and limbs), and delays in reaching developmental milestones such as walking and talking. Because so few cases have been reported, our understanding of this condition remains limited. The exact genetic cause has not been firmly established, and there is no specific cure or targeted treatment available. Management focuses on addressing individual symptoms — for example, orthopedic care for bone problems, special education support for learning difficulties, and physical or occupational therapy to help with motor skills. Patients benefit from a coordinated team of specialists who can monitor growth, development, and any complications that may arise over time. If you or your child has been diagnosed with this condition, working closely with a clinical geneticist is an important first step to guide care and connect with available resources.

Key symptoms:

Short statureSkeletal abnormalitiesIntellectual disability or learning difficultiesDelayed development of motor skillsUnusual facial featuresAbnormalities of the spineLimb bone abnormalitiesSpeech delay

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Fukuda-Miyanomae-Nakata syndrome.

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No actively recruiting trials found for Fukuda-Miyanomae-Nakata syndrome at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Fukuda-Miyanomae-Nakata syndrome community →

No specialists are currently listed for Fukuda-Miyanomae-Nakata 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 Fukuda-Miyanomae-Nakata syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Fukuda-Miyanomae-Nakata 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 tests can help confirm this diagnosis?,Should we pursue whole exome or whole genome sequencing to look for a genetic cause?,What therapies do you recommend to support my child's development?,How often should we schedule follow-up visits and imaging for skeletal monitoring?,Are there any clinical studies or research programs we could participate in?,What educational supports should we request from the school?,Is genetic counseling recommended for our family regarding future pregnancies?

Common questions about Fukuda-Miyanomae-Nakata syndrome

What is Fukuda-Miyanomae-Nakata syndrome?

Fukuda-Miyanomae-Nakata syndrome is an extremely rare genetic condition that has been described in only a handful of patients in the medical literature. This syndrome is also sometimes referred to by its Orphanet designation (ORPHA:2060). It is characterized by a combination of skeletal abnormalities, intellectual disability, and distinctive facial features. Affected individuals may show short stature, abnormalities of the bones (particularly the spine and limbs), and delays in reaching developmental milestones such as walking and talking. Because so few cases have been reported, our understa

At what age does Fukuda-Miyanomae-Nakata syndrome typically begin?

Typical onset of Fukuda-Miyanomae-Nakata syndrome is childhood. Age of onset can vary across affected individuals.