I have suspected that I have MODY/monogenic diabetes, but have reached an impasse finding help or information. The US appears to be terrible for MODY, the JDRF has assumed a front line running the monogenicdiabetes.org site and the hotline. But they are incompetent, the people answering the phone knew nothing about MODY and seemed to only want my money. I asked about referrals to MODY experts in my area or testing centers and they knew nothing. I would expect more.
There is one center in the US that does work on MODY Kovler Diabetes in Chicago, they focus on forms that present in infant, so they may help. In my case, repeated inquiries went unanswered.
There are several centers in the US that will do the testing, but they are very expensive, costing at least several thousand dollars for sequencing. AthenaDiagnostics is the biggest one.
What I did find is that the worlds leading reseach and clinical center that deals with MODY is Exeter. Led by A T Hattersley, this is the center with the biggest track record, experience and team focused on MODY. You can get testing through Exeter at relatively reasonable prices, it is done for people across the world. Your doctors can consult with the experts at Exeter.
Each form of MODY is different and has different treatments and prognosis. A summary of the different types can be found at the NDIC. I am sure waiting is just terrible. But do keep your hopes up, many of the forms are really quite managable.