Table 11.

Key messages regarding Alport syndrome

Alport syndrome is a genetic condition that can cause kidney failure and/or deafness and/or visual features but this is not the case for everyone with Alport syndrome as the clinical condition is extremely variable

Alport syndrome is the most common genetic kidney disease and the second most common cause of kidney failure after autosomal dominant polycystic kidney disease

Men are typically more severely affected than women in X-linked Alport syndrome but women with X-linked disease can also get early onset kidney failure so they should be closely monitored

There are other genetic subtypes of Alport syndrome and genetic testing allows precise diagnosis which allows for better family screening, a better understanding of the potential outcomes, better access to clinical trials, and is very helpful in family planning

Treatment with the highest tolerated dose of an ACE inhibitor (or angiotensin receptor blocker (ARB)) can slow the progression of kidney disease by years. Research is fast-changing due to a vibrant global research community collaborating on new treatments and it is important to understand the latest developments that might impact people living with Alport syndrome

Most people living with Alport syndrome who develop kidney failure will be eligible for a kidney transplant, which has a good chance of success