Living with Renal agenesis
A condition present from birth in which one or both kidneys, and the tubes that drain them, did not develop.
Understanding Renal agenesis
When only one kidney is missing, it is called unilateral renal agenesis. When both are missing, it is called bilateral. GARD lists onset during pregnancy or as a newborn.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- One or both kidneys missing
- Missing ureter (the tube from the kidney to the bladder)
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 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
- 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 gene changes cause this condition. It lists both autosomal dominant and autosomal recessive inheritance. It doesn't name a gene here.
Also known as: absent kidney; absent/small kidney; absent/underdeveloped kidney; congenital absence of the kidney; hereditary renal aplasia; hereditary urogenital adysplasia
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 Renal agenesis.
Explore research for Renal agenesis
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- Eligibility is confirmed by the study team
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