According to a study from Hindawi, a team of scientists have reported the discovery of never before seen mutations that are linked to Alport syndrome, a rare kidney disease. These…
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 the rare disease community as…
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 completed. This trial is testing…
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 testing its experimental product candidate…
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 to issue a postage stamp…
The Word "Rare" Unfortunately, many experts in rare disease believe the phrase "rare disease" may be harming the very population it describes. The Director of the National Center for Advancing…
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 a meeting with representatives from…
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 released. One of the studies…
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