Hi JeriM,
Have you tried joining the FA forum that can be found through this link:
http://fanconi.org/index.php/family_support
I don't know how active the group is, but it does seem to cater to adult patients and parents of children with FA.
I had FA genetic testing done as part of a research study. They would not tell me my results at the end but said to do genetic testing/counseling if I was interested. (I haven't done this yet.)
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
|