Alport Syndrome Foundation (ASF)

Alport Syndrome Foundation Partnership

The Alport Syndrome Foundation (ASF) is a patient-led nonprofit organization based in the United States dedicated to improving the lives of individuals and families affected by Alport Syndrome, a rare inherited kidney disease. Established in 2007, ASF seeks to advance meaningful change through education, advocacy, and direct investment in research, helping ensure that people living with Alport Syndrome have access to the best information, resources, and research opportunities.

ASF advances Alport syndrome research by funding studies, supporting research infrastructure, and fostering collaboration between patients and researchers. Through initiatives like the ASF Alport Patient Registry, research funding programs, and active engagement in ensuring the patient voice is included in designing clinical trials, ASF helps generate the essential data on disease progression and treatment opportunities.

In 2026, The Kidney Foundation of Canada partnered with ASF to support an Alport syndrome study with NEPTUNE (Nephrotic Syndrome Study Network). NEPTUNE is a long‑standing international research consortium focused on advancing understanding of specific kidney diseases through detailed clinical, genetic, and biological data collection.

Supported by the Pedersen Alport Syndrome Research Fund, KFOC invested $50,000 USD into the Alport Ancillary Study within NEPTUNE, a natural history study generating high‑quality data and biospecimens to inform clinical trials and treatments development.

Read more about the project here: A New Partnership to Advance Rare Kidney Disease Research

Importance to The Kidney Foundation of Canada

The Kidney Foundation of Canada strives to improve the lives of people living with kidney disease by supporting high‑quality, patient‑driven kidney research, particularly for rare diseases which require sustained collaboration and long‑term investment.

By partnering with ASF, we can better support rare kidney disease research while amplifying patient voices and contributing Canadian expertise to an international research effort. This collaboration reflects our commitment to fostering meaningful partnerships that accelerate discovery and lead to real‑world improvements in care and outcomes for patients and families.

For more information about ASF, please visit the website: alportsyndrome.org