- Action for Alport’s Campaign (KRUK)
- Rarerenal.org page on Alport Syndrome (edited by Prof. Neil Turner)
- Rare Diseases
- British Renal Society
- FEDERG
- Eurordis
- RD connect
- RADAR
- Alports Warriers facebook page (a closed group, please ask to join)
- Action for Alport’s facebook and twitter
- Infokids
Other national patient organisations:
- Alport Syndrome Foundation
- Alport Syndrome Foundation of Australia
- AIRG France, Belgium etc