Ring chromosome syndrome

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ORPHA:363203
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2Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Ring chromosome syndrome is a rare genetic condition that occurs when a chromosome breaks at both ends and the broken ends rejoin to form a circular or ring shape. This can happen with any of the 46 chromosomes in the human body. When a ring chromosome forms, small pieces of genetic material from the tips of the chromosome are usually lost, which can lead to a variety of health problems depending on which chromosome is affected and how much genetic material is missing. The symptoms of ring chromosome syndrome vary widely from person to person. Common features include growth delays, intellectual disability or learning difficulties, and distinctive facial features. Some individuals may have only mild symptoms, while others can be more severely affected. The severity often depends on how much genetic material was lost when the ring formed and whether the ring chromosome is unstable, meaning it can be lost or duplicated in some cells of the body (a situation called mosaicism). There is currently no cure for ring chromosome syndrome. Treatment focuses on managing the specific symptoms each person experiences. This may include growth hormone therapy for short stature, special education support for learning difficulties, physical therapy, speech therapy, and regular monitoring by various specialists. Early intervention and supportive care can significantly improve quality of life for affected individuals.

Key symptoms:

Short stature or growth delaysIntellectual disability or learning difficultiesDelayed speech and language developmentDelayed motor milestones like sitting or walkingDistinctive facial featuresSmall head size (microcephaly)Low muscle toneSeizures or epilepsyBehavioral challengesFeeding difficulties in infancySkin changes such as café-au-lait spotsHeart defects in some casesSkeletal abnormalitiesDelayed puberty or hormonal issuesVision or hearing problems

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Ring chromosome syndrome.

View clinical trials →

No actively recruiting trials found for Ring chromosome syndrome at this time.

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

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Specialists

2 foundView all specialists →
TB
Tommaso Pippucci, Biologist
Bologna
Specialist

Rare Disease Specialist

PI on 3 active trials
NM
Nathalie Douet-Guilbert, MD,PhD
Specialist
PI on 1 active trial

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 Ring chromosome syndrome.

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Community

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Latest news about Ring chromosome syndrome

No recent news articles for Ring chromosome 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.Which chromosome is affected, and how much genetic material has been lost?,Is the ring chromosome stable, or is there mosaicism that could change over time?,What specific health screenings should my child have and how often?,What early intervention therapies do you recommend starting right away?,Are there any clinical trials or research studies we should know about?,What is the expected developmental outlook for my child based on their specific findings?,Should other family members be tested to see if this was inherited?

Common questions about Ring chromosome syndrome

What is Ring chromosome syndrome?

Ring chromosome syndrome is a rare genetic condition that occurs when a chromosome breaks at both ends and the broken ends rejoin to form a circular or ring shape. This can happen with any of the 46 chromosomes in the human body. When a ring chromosome forms, small pieces of genetic material from the tips of the chromosome are usually lost, which can lead to a variety of health problems depending on which chromosome is affected and how much genetic material is missing. The symptoms of ring chromosome syndrome vary widely from person to person. Common features include growth delays, intellectu

How is Ring chromosome syndrome inherited?

Ring chromosome syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Ring chromosome syndrome typically begin?

Typical onset of Ring chromosome syndrome is neonatal. Age of onset can vary across affected individuals.

Which specialists treat Ring chromosome syndrome?

2 specialists and care centers treating Ring chromosome syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.