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Author: Kevin Schnurr

Alport Odyssey Zine

March 23, 2023 ASF is requesting U.S. patient submissions for the inaugural publication of Alport Odyssey, a zine exploring the Alport syndrome experience through the creative works of Alport patients. ​Alport Odyssey is a​​ space for patients to explore their lived experiences with​ ​Alport Syndrome by sharing artistic representations of stories, lessons, and reflections with […]

re: FDA Decision on Bardoxolone Methyl

                                                                                                                        February 25, 2022 On February 25th, the U.S. Food and Drug Administration (FDA) announced its decision not to approve a New Drug Application for the use of bardoxolone methyl as a treatment for Alport syndrome. Bardoxolone methyl was investigated for safety and efficacy in Alport patients through the CARDINAL Study, the first-ever clinical trial […]

Join Us: Direct Connect Meetings

ASF invites you to join us for 60-minute, staff- and volunteer-moderated Direct Connect virtual meetings (held over Zoom) that provide important opportunities for patients and family members to meet others facing similar life circumstances, ask questions, identify areas of need, and help lay groundwork for future educational content. Topics will vary by month. Unless indicated […]

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