Yvonne,
Try posting in the forums at pnhdisease.org. There are a lot more PNH patients there than here, and AA+PNH is common. There are also a couple of Facebook groups for PNH. At pnhdisease.org -> PNH Forums -> PNH Daily Posts, you'll see a thread entitled "Where is everybody?" and in that tread are links to the Facebook groups.
|