Richieri Costa-da Silva syndrome

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ORPHA:3101OMIM:255710Q87.8
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8Treatment centers

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Overview

Richieri Costa-da Silva syndrome is an extremely rare genetic condition that affects multiple parts of the body, primarily involving the face, hands, and skeletal system. It was first described by Brazilian geneticists Richieri Costa and da Silva. The syndrome is characterized by distinctive facial features, abnormalities of the hands and feet, and intellectual disability. Affected individuals may have a flat or underdeveloped midface, a broad nasal bridge, cleft palate or other mouth abnormalities, and short stature. Hand and foot differences can include shortened fingers or toes and other skeletal malformations. Because this condition is so rare, with only a handful of cases reported in the medical literature, our understanding of the full range of symptoms and the best approaches to treatment remains limited. There is currently no cure for this syndrome. Treatment focuses on managing individual symptoms and may involve surgery for skeletal or facial abnormalities, speech therapy, physical therapy, and educational support for developmental delays. A team of specialists working together provides the best care for affected individuals.

Also known as:

Key symptoms:

Flat or underdeveloped midfaceBroad nasal bridgeCleft palate or high-arched palateShort statureShortened fingers or toesIntellectual disability or developmental delayAbnormal shape of the skullLow-set or abnormally shaped earsSkeletal abnormalities of the hands and feetSpeech delayWidely spaced eyesLimb abnormalities

Clinical phenotype terms (36)— hover any for plain English
Generalized bone demineralizationHP:0006462Intermittent painful muscle spasmsHP:0011964Handgrip myotoniaHP:0012899Myotonia of the upper limbHP:0012903Weak voiceHP:0001621Decreased anterioposterior diameter of lumbar vertebral bodiesHP:0005638Vertebral wedgingHP:0008422EMG: myokymic dischargesHP:0100288Metatarsus adductusHP:0001840
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Richieri Costa-da Silva syndrome.

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No actively recruiting trials found for Richieri Costa-da Silva syndrome at this time.

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No specialists are currently listed for Richieri Costa-da Silva 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 Richieri Costa-da Silva syndrome.

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Community

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Latest news about Richieri Costa-da Silva 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 features does my child have that led to this diagnosis?,Are there genetic tests that could confirm the diagnosis or identify the exact cause?,What surgeries or treatments might my child need, and when should they happen?,How will this condition affect my child's learning and development?,What therapies should we start right away?,Is there a risk that future children could also be affected?,Are there any research studies or registries we should consider joining?

Common questions about Richieri Costa-da Silva syndrome

What is Richieri Costa-da Silva syndrome?

Richieri Costa-da Silva syndrome is an extremely rare genetic condition that affects multiple parts of the body, primarily involving the face, hands, and skeletal system. It was first described by Brazilian geneticists Richieri Costa and da Silva. The syndrome is characterized by distinctive facial features, abnormalities of the hands and feet, and intellectual disability. Affected individuals may have a flat or underdeveloped midface, a broad nasal bridge, cleft palate or other mouth abnormalities, and short stature. Hand and foot differences can include shortened fingers or toes and other sk

How is Richieri Costa-da Silva syndrome inherited?

Richieri Costa-da Silva syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Richieri Costa-da Silva syndrome typically begin?

Typical onset of Richieri Costa-da Silva syndrome is neonatal. Age of onset can vary across affected individuals.