Living with Ververi-Brady syndrome 1
A rare genetic condition with developmental delay, short stature, bone growth differences, and changes in facial features.
Understanding Ververi-Brady syndrome 1
Facial features vary and may include wide-set eyes, a broad nose, and low-set, cup-shaped ears. Autism spectrum disorder and nervous system differences have also been reported. Signs can begin during pregnancy, at birth, or in infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Developmental delay and intellectual disability
- Delayed speech and language
- Small head size (microcephaly)
- Low muscle tone (hypotonia)
- Feeding difficulties
- Autistic behavior
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include bone and joint specialists, brain and nervous system specialists and genetic specialists.
- 3Consider genetic testing
Changes in QRICH1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
This condition is caused by changes in the QRICH1 gene. A child can get it from one parent with the changed gene (autosomal dominant).
Also known as: verbras1
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ververi-Brady syndrome 1.
Explore research for Ververi-Brady syndrome 1
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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