Hi Sneipp,
I looked up Dr. Glader, and he is THE MAN to see! Check out this bio:
http://c3dibd.org/AboutCIBD.html
Dr. Gotlib is great but I forgot that you need someone in the pediatric department.
When I was in an HMO, I called the benefits department and asked for a "one time referral to someone out of network". Explain that your children may have a rare genetic disease and that there are no experts within your HMO. Say that you will only do a consultation and that you will follow-up with all tests/labs at your HMO. This worked for me.
Best of luck! It sounds like your on a good track to finding answers!
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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