Alport Syndrome Foundation

Recent papers from Alport Syndrome Foundation

1. Diagnosis, management and treatment of the Alport syndrome – 2024 guideline on behalf of ERKNet, ERA and ESPNNephrology Dialysis Transplantation · 2024
2. Lessons Learned from HERA: the First Alport Syndrome Therapeutic Clinical TrialClinical Journal of the American Society of Nephrology · 2024
3. Patient and Caregiver Perspective on PRO-Kid Quality of Life ToolClinical Journal of the American Society of Nephrology · 2024
4. What patients want to know about genetic testing for kidney diseaseFrontiers in Medicine · 2023
5. An Alport Syndrome Journey: From Powerless to Empowered – A Patient PerspectiveGlomerular Diseases · 2023
6. Genetics in chronic kidney disease: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies ConferenceKidney International · 2022
7. The 2019 and 2021 International Workshops on Alport SyndromeEuropean Journal of Human Genetics · 2022
8. Co-creation of practical “how-to guides” for patient engagement in key phases of medicines development—from theory to implementationResearch Involvement and Engagement · 2021
9. Clinical trial recommendations for potential Alport syndrome therapiesKidney International · 2020
10. The importance of clinician, patient and researcher collaborations in Alport syndromePediatric Nephrology · 2019
11. Alport Syndrome in Women and GirlsClinical Journal of the American Society of Nephrology · 2016
12. Advances and unmet needs in genetic, basic and clinical science in Alport syndrome: report from the 2015 International Workshop on Alport SyndromeNephrology Dialysis Transplantation · 2016
13. The 2014 International Workshop on Alport SyndromeKidney International · 2014
14. X-linked Alport SyndromeJournal of the American Society of Nephrology · 2000