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Check out this article: campaigns.rarediseases.us/t/ViewEmail/r/566DCF7AEB660A732540EF23F30FEDED/15C6AD15CC1AC540981D23A7722F2DCD And more about Compassionate Allowances (which does not include Alport Syndrome): socialsecurity.gov/compassionateallowances/ Consider being a part of the effort to expand Compassionate Allowances, the first article has a draft letter and information on how to participate.

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