INFORMATION FOR PATIENTS

Alport Syndrome is a genetic disease that affects the kidneys, hearing and eyesight.

 What is Alport Syndrome and how does it affect people?

• For an overview of Alport Syndrome, the cause of this disease, how it affects people and further information about the genetics of this disease – please click the following link;
  • Genetics Home Reference – Alport syndrome

How do other people feel and what is their experience?

• Larissa and Antony’s story – KHA website
  • http://kidney.org.au/your-kidneys/support/patient-and-carer-support/patient-stories

Patient Support Groups

• Alport Foundation of Australia
  • http://www.alport.org.au/html
• Alport UK
  • http://www.alportuk.org/

Further Information

• KHA Fact Sheet – Alport Syndrome
  • http://kidney.org.au/cms_uploads/docs/kidney-health-australia–alport-syndrome-fact-sheet.pdf

More detailed Information for Patients will be available on the ARRK website in the near future.

If you would like to be part of a Disease Specific Research Group (DSRG) for Alport Syndrome, please contact the ARRK registry (arrkregistry1@gmail.com).

The resources on this site should not be used as a replacement for care or advice from your medical doctor. If you have questions about a medical condition or health related issue, please consult your medical doctor or a healthcare professional.

This page was last updated on 15th Oct, 2018.