Welcome to Alport Foundation of Australia

Our aim is to raise the awareness of Alport Syndrome so that a greater number of patients and families affected by this genetic kidney disease will become aware of their condition years sooner than they might otherwise have been. This will not only give those people the opportunity to take health promotion steps to slow down their decline, but will also give them access to information on any emerging preventative treatments, under the guidance of our board which includes several eminent and highly qualified Australian clinicians and researchers.

Contact Us
+61 (02) 40160242

What is Alport Syndrome?

Alport Syndrome is a genetic disease of the kidneys, which causes progressive renal failure, hearing loss, and eye abnormalities, including lenticonus, thinning of the retina, fleck retinopathy and corneal scaring. It is inherited, and estimated to affect at least 1 in 2,500 people. Limited use of  genetic testing means the actual number of people with this hereditary disease is unknown. Genetic kidney disease often goes undiagnosed or is discovered when it is too late. 90% of males with Alport Syndrome will develop renal failure by the age of forty, and 15% – 30% of women will develop renal failure by 60 years of age. Affected women are commonly undiagnosed, until the kidneys are failing and the disease has already been unwittingly passed on to children. Diagnosis of females is very important, because an affected woman has a 50% chance she will pass the disease to her sons and daughters. While it is thought that Alport Syndrome primarily and more severely affects men, twice as many women are affected by X-linked inheritance. Autosomal recessive inheritance is less common. It is often mistaken for the X-linked disease, and causes early-onset renal failure in women and men.

Genetic Awareness

Dr. Alison Blatt

Read Alison’s personal Recount of Preimplantion Genetic Diagnosis to prevent ALPORT SYNDROME

PGD

Help us find a cure for Alport Syndrome

Medical Staff