HFI Doctor US East coast?

[allison]

Hi All

I am looking for a doctor who knows about HFI in adults in the US. Anyone have any suggestions? I have been in contact with Dr Johnson in the past but hoping to find a regular physician. I am 55 and was diagnosed with HFI at 30 by Dr Tolan's lab. 

Allison

[ukbill]

Good luck with that anywhere in the world.
The only people I know are in the UK where we have NHS genetic clinics where we can find HFI specific help, in some of them.
The USA is a big place. I know some people do have some luck but usually highly specific to particular areas.
Have you tried some of the Facebook HFI groups they are quite lively and have plenty of American people willing to help.
www.facebook.com/groups/1787259404931697/
this one is for proven HFI people like yourself.
www.facebook.com/groups/FructosemiaHFI/
www.facebook.com/groups/113899495818790/
hope this helps.

[allison]

Thank you!

Allison