Survey seeks input from Alport Syndrome patients and families Your voice is important! An Australian student research study seeks to explore family understanding of Alport Syndrome, its psychosocial impact, and individual attitudes to genetic testing, reproductive options and genetic counselling. The goal of the project is to provide recommendations for healthcare practitioners supporting families affected by this inherited condition. You can provide valuable input about your own experiences, either as a patient or as a family member of someone affected by Alport Syndrome, by participating in a short research study survey. Please take 15 minutes to complete the survey. This is a great opportunity to contribute to research that will directly benefit Alport Syndrome families.
Posted on: Tue, 29 Apr 2014 21:24:07 +0000
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