Much effort is going into developing treatments that correct the genetic defects in Alport syndrome. These clinical trials are often publicised through the Alport Syndrome Foundation in the US (https://alportsyndrome.org/) and depend on the type of mutation that a person has. The ASF also coordinates a Patient Registry with data submitted by the patients themselves, as well as organising educational events, including for young people. Alport UK also has a website and coordinates Patient Study days and the International Alport workshops which bring together researchers and patients from around the world (Alport UK, https://www.alportuk.org/).
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