Alport Connect 2024 July 27-28, 2024 Denver, CO ASF’s patient and family meeting, Alport Connect, will return in 2024. The in-person event will be held in Denver, Colorado. Please check…
Setanaxib is a NOX enzyme inhibitor initially developed by Calliditas Therapeutics AB (“Calliditas”) for the treatment of primary biliary cholangitis. NOX enzymes produce reactive oxygen species (ROS) in the…
Medical research is crucial in better understanding diseases and discovering novel treatment options. Unfortunately, there is often one large barrier to research: funding. This is especially true within the rare…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Alport Connect 2022 August 6-7, 2022 Two days of ALL NEW live, interactive discussions and connection opportunities featuring Alport syndrome patients, medical experts, and researchers. All Alport Connect 2022 content will be…
Doctor Jeffrey Miner, who is a member of the Alport Syndrome Foundation's (ASF) Scientific Advisory Research Network, was just awarded a Ro1 grant worth 2.25 million dollars for his research in Alport…
Happy Friday! This week, we'd like to get to know more about you! Fill out the 2021 Patient Worthy Reader's Survey and let us know the reasons you come to…
Jeffrey Miner, Ph.D., Director of Basic Research in Washington University’s Division of Nephrology, has received a $2.25M five-year grant from the National Institute of Diabetes and Digestive and Kidney…
Each year, the National Kidney Foundation (NKF) holds a Kidney Walk to help provide support and assistance to those with chronic kidney disease (CKD) and other kidney-related conditions. Due to…
When organizations partner together to work towards improving patient outcomes, it can also help to increase the understanding and spur research of certain conditions. According to Healio, a recent…
Written by Kevin Schnurr A renal patient seeks clarity amidst ongoing, conflicting reports. It’s not every day I’m constantly reminded of my status as someone post-organ transplant, but…
When is hearing loss a good thing to discover in a child? It sounds like the beginning of a “dad joke.” The answer and consequences are real, and in the…
According to a story from the Knowridge Science Report, a recent study conducted by the Japanese Kumamoto University indicates that a therapy commonly used to treat diabetes, called metformin, can…
Normally, metformin is used to help control blood sugar in patients with type 2 diabetes. However, new research suggests that the treatment option could also be beneficial for those with…
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…
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…
A drug being developed to treat chronic kidney disease in Alport syndrome is showing promising results in patients in an on-going phase 2 clinical trial. Patients have shown an increase…
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