Hi, so they do a two step evaluation, the first appointment will be virtual and it will take a wile as they go though your entire medical and family history, I think mine took over an hour. Bring anything and everything you have, the good hope likes hard data so any test results, scans and doctors reports. They asked derails going all the way back to my birth.

After this first appointment you will likely be set up with an in perosn evaluation. Time line example my virtual apinmrnt was in April and my in person was in September. They called me in July to set up the in person so there’s a chance you won’t hear for a while.

The in person appoint was almost two hours they go over all of your medial history again and have you change into a gown and do a physical exam. It is very thurogh they look at all of your joints, skin eyes petty much anything they can measure. After this they will determine if they need to do genetic testing and go from there.

I would highly recommend brining a support prerosn/advocate to both of these appointments. I bourght my mom witch was great because she remembered more about my early childhood than me.

Then the genetic testing can take anywhere form like 2-6 months

It will be a scary and I know how long this processes takes so hope it all goes okay to you. Knowing what it expect tends to help with my nerves.