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Living with Renal dysplasia

A kidney condition in which the kidneys are present but developed abnormally.

Understanding Renal dysplasia

Renal dysplasia is a rare kidney malformation in which the kidneys form but develop abnormally.

The kidney tissue has an unusual structure and contains early, undeveloped tissue types. It can affect one or both kidneys, may involve only part of a kidney, and varies in severity. It can be found at any time in life.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Small or underdeveloped kidneys
  • Kidney cysts
  • Chronic kidney disease
  • Bladder problems
  • Kidney tubule and filter differences
  • Frequent urinary tract infections

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include genetic specialists and kidney specialists.

  3. Ask 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
Bring these questions to your next doctor visit
Is one kidney or are both affected, and how well do they work?
How often should kidney function be checked?
Would genetic testing help our family?

Quick facts

Symptoms usually startany time in life
InheritanceAutosomal Dominant

GARD says gene changes cause this condition and lists autosomal dominant inheritance. It doesn't name a gene here.

GeneticKidney

Also known as: congenital renal dysplasia; dysplasia of kidney; dysplastic kidney; dysplastic kidneys; kidney dysplasia; renal adysplasia

Patient organizations

Source: NIH GARD · Renal dysplasiaGARD ID 19173 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Renal dysplasia.

Explore the Renal dysplasia blog

Explore research for Renal dysplasia

Explore actively recruiting Renal dysplasia studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Renal dysplasia 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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