Living with Ulbright-Hodes syndrome
A very rare condition present at birth with kidney differences, short or fused limb bones, and genital differences.
Understanding Ulbright-Hodes syndrome
Other features include genital differences and a distinctive facial look. GARD says it has been described in three infants. It is noticed at birth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Short forearm and lower leg bones
- Fused arm bones (humeroradial synostosis)
- Rib differences
- Club feet
- Differences in the external genitals
- Differently shaped ears and a beaked nose
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, genetic specialists and kidney 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); Kidney specialists (nephrologists)
- 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 National Kidney Foundation and other patient organizations
- 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 it appears to be autosomal recessive, so a child inherits a changed copy of a gene from each parent. It doesn't name a specific gene.
Also known as: renal dysplasia with limb defect syndrome; renal dysplasia-limb defects syndrome; renal dysplasia-mesomelia-radiohumeral fusion syndrome; renal dysplasia, mesomelia, radiohumeral fusion syndrome; rl syndrome; ulbright hodes syndrome
Patient organizations
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ulbright-Hodes syndrome.
Explore research for Ulbright-Hodes syndrome
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- Recruiting studies from ClinicalTrials.gov
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- 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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