I haven’t heard anything good about the OHSU genetics dept with EDS either. Only have had one friend who went through them, all her doctors are at OHSU, and it was not a helpful experience. She has the Marfan’s look and they ruled that out only based on an ECHO, which maybe is good enough.
Anyway, it is good to know that Shriner’s seems to be doing a good job. Will have to keep that in mind in case we ever get to the point we need a genetic appt or other specialist for my kids.
When you come to Portland do you do it all in one day and drive home again? That is a LONG day! I know you don’t know me, and maybe you have other contacts in the Portland area, but maybe we could meet for coffee or something if you stay longer than the one day. 🙂