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Kidney diseases

Alport syndrome

An inherited disease that affects the kidneys, ears and eyes. Blood is found in the urine and kidney function slowly decreases. Hearing loss often comes with it.

Not part of the panel of Türkiye's National Newborn Screening Programme (heel-prick test). Source

Prepare an emergency card

This page is translated from the Turkish original.

This disease is followed through the “Kidney diseases” group.

Understanding the disease

This section has not yet been reviewed by a physician. It summarises patient information from sources such as MedlinePlus, Orphanet and the NHS in plain language. The disease can differ from person to person; talk to your doctor about diagnosis and treatment.

What happens in this disease?

A structural protein called collagen IV is made incorrectly. This protein is important in the filters of the kidney, in the inner ear and in the eye. When the filter is damaged, blood and protein leak into the urine. Over time, scar tissue develops in the kidney.

Which symptoms can occur?

Symptoms vary from person to person and by sex.

  • Blood in the urine (in almost all)
  • Protein leaking into the urine (common)
  • Kidney function slowly decreasing
  • Hearing loss in late childhood or the teenage years (common)
  • A change in the shape of the lens of the eye; it rarely affects vision
  • A more severe course in males in the X-linked type

How is it diagnosed?

A urine test looks for blood and protein. A genetic test confirms the diagnosis and shows the type of inheritance. If needed, a tissue sample from the kidney or skin, called a biopsy, is taken. Hearing and eye examinations are also done.

Treatment and care

There is no treatment yet that cures the disease completely. Some blood pressure medicines started early can slow kidney damage. If kidney failure develops, dialysis or a kidney transplant is done. The disease does not come back in the transplanted kidney. A hearing aid usually helps. Research is ongoing. The doctor who follows the disease decides which treatment is suitable.

For the family: inheritance and genetic counselling

Inheritance can happen in three ways. The most common type is X-linked; males are more severely affected and a father does not pass it to his son. About 15 percent are recessive; for a carrier couple, the chance of an affected child in each pregnancy is 1 in 4. Some are passed on in a dominant way. Genetic counselling is recommended to find out the type.

Source: MedlinePlus Genetics: Alport syndrome · NORD: Alport Syndrome

Key facts

When does it usually start?
Adolescence, Adulthood, Childhood, Older age

These facts are taken from Orphanet and MedlinePlus records (last checked: October 7, 2026). Frequency values are approximate ranges.

You are not alone: patient associations in Türkiye

Non-profit patient and family organizations in Türkiye working on this disease or disease group. Links are for information; Doktorclub is not affiliated with these organizations and does not endorse them.

We could not find a patient association specific to this disease.

For all rare diseases: Nadir Hastalıklar Federasyonu

Support and help

Doktorclub does not diagnose, recommend treatments or refer you to hospitals or doctors. These pages are meant to help you talk with your doctor.

News about Alport

Clinical trials (ClinicalTrials.gov)

A clinical trial is a regulated study that tests whether a new treatment is safe and whether it works, in patients who volunteer. Most trials look for a certain age, genetic change and health condition. Taking part is voluntary.

This list is not a treatment recommendation. Treatments tested in phase 1–3 trials are investigational (experimental): their efficacy and safety have not yet been proven and they are not approved treatments. Taking part depends on each trial’s criteria and a physician’s assessment; the first step is to talk to the doctor who manages your care.

Questions you can ask your doctor

  • Could this trial be suitable for us?
  • If we take part, how would current treatment and check-ups be affected?
  • Where does the trial take place, and how are travel and accommodation handled?
  • What happens if we want to leave the trial?

ClinicalTrials.gov lists 7 active interventional studies for this disease. 3 are recruiting now; none has a site in Türkiye. Last checked: October 7, 2026.

Selected records (studies with a site in Türkiye first):

See all studies on ClinicalTrials.gov · Joining clinical trials

Kidney diseases: other news

Medical codes (for talking with your doctor and finding sources)

These codes identify the disease in international classifications and databases. They can help when you talk with your doctor or look for reliable sources.

Orphanet code: ORPHA:63

No separate ICD-11 code; WHO classifies this disease under: LD2H.Y

Codes checked against WHO ICD-11 and Orphanet on October 7, 2026.

This page provides general information and does not replace diagnosis or treatment. Talk to your doctor about symptoms, diagnosis and treatment.

The information on these pages is for general information only and does not replace medical advice. Talk to your doctor about diagnosis and treatment decisions. In an emergency in Türkiye, call 112.

Every update is based on an open source and labeled with its level of evidence. No advertising and no drug brand names. Our scientific principles

This page was translated from Turkish by the Doktorclub editorial team.