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hello I'm Brad Wy Pediatric nefrologist and member of the alport syndrome foundation's medical advisory committee if you and or your child have been diagnosed with alport syndrome you have the unique opportunity to improve our understanding of this rare disease by enrolling in the ASF alport patient registry which only requires answering a few short surveys on a secure online platform you can help Advance research that may lead to potential treatments or even a possible cure this information about the experiences of individuals living with alport syndrome is critical for research I also serve on the scientific Advisory board for the ASF alport patient registry meaning that I help review and approve or not approve requests by researchers to access this data all the registry data is completely deidentified approved research projects are provided group data in the form of graphs and charts but no names or identifying details of individual patients are attached to this info

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