Living with Urban-Rogers-Meyer syndrome
A rare condition that affects learning, growth, bones, and hands and feet, with signs usually seen in infancy.
Understanding Urban-Rogers-Meyer syndrome
Signs are usually seen in infancy. People may also have genital differences, an unusual facial appearance, a curved spine, thin bones (osteoporosis), and frequent broken bones. GARD says the cause is currently unknown.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Intellectual disability
- Obesity
- Thin bones (osteoporosis) and repeated fractures
- Rounded upper back (kyphosis)
- Short fingers, toes, or feet
- Bent fingers or toes (contractures)
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 brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- 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
GARD says the cause is currently unknown, and it doesn't list a gene or inheritance pattern.
Also known as: intellectual disability and short stature with hand contracture and genital anomaly syndrome; intellectual disability-short stature-hand contractures-genital anomalies syndrome; prader willi habitus with osteopenia and camptodactyly; prader-willi habitus-osteopenia-camptodactyly syndrome; urban rogers meyer syndrome
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 Urban-Rogers-Meyer syndrome.
Explore research for Urban-Rogers-Meyer syndrome
Explore actively recruiting Urban-Rogers-Meyer syndrome studies with HealthSpark.
Find actively recruiting studies for Urban-Rogers-Meyer syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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