Improve diagnosis and standards of care.

Alport Syndrome Alliance will be a conduit for up to date, accessible information and will disseminate to the national patient organisations and clinicians in order to improve diagnosis and treatment. 

Improve diagnosis & standards of care

  • Develop up-to-date Health Guidelines and Standards of Care and make them readily accessible for physicians

  • Create tools (such as natural history studies) in order to continuously support our Health Guidelines and Standards of Care with accurate and well studied data

  • Actively promote early diagnosis by disseminating information about this rare disease to physicians and set specific targets to improve global early diagnosis for all individuals affected

  • Develop an education plan to create a better understanding of Alport Syndrome and a better quality of life for Alport patients.