Alport Syndrome Foundation
We are the leading patient-led, independent, non-profit organization in the United States educating and giving a voice to the Alport syndrome community.
Our Mission is to improve the lives of those affected by Alport syndrome through education, empowerment, advocacy and research. Our Vision is to conquer Alport syndrome.
Alport Syndrome Foundation directs the majority of its resources to research and research-related activities. We also raise awareness and provide educational resources for patients, medical professionals and researchers through our website, regular email communication with patients, social media presence, and participation at medical and rare disease conferences.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Resources & Support
Patient Worthy Posts on Alport Syndrome
Results From Studies of an Experimental Drug for Chronic Kidney Disease Have Been Announced
Results from two studies looking at the effects of an experimental drug (bardoxolone) on kidney function in patients with chronic kidney disease (CKD) have been
Alport Syndrome Patients Met With the FDA About Drug Development
According to a story from PR Newswire, patients with Alport syndrome, supported by the National Kidney Foundation and the Alport Syndrome Foundation, were involved in
Macedonian Mother Successfully Advocates for World’s First Rare Disease Postage Stamp
This bit of 2017 news flew under the radar! But it’s worth shining a spotlight! In 2017, Macedonia became the first country in the WORLD
The Results of This Phase 3 Alport Syndrome Trial Look Promising
According to a story from Globe Newswire, the biopharmaceutical company Reata Pharmaceuticals, Inc., recently announced the results of a phase 3 clinical trial that was
Year Two of This Alport Syndrome Trial Concludes with Encouraging Findings
According to a story from GlobeNewswire, the biopharmaceutical company Reata Pharmaceuticals, Inc., recently announced that year two of its phase 3 clinical trial has been
Boy with Alport Syndrome Wins Award for his Rare Disease Advocacy
Grant Bonebrake was diagnosed with Alport syndrome at age 12. Since then, he has gone on to advocate for not only Alport syndrome patients, but
