3 4 dap
 

For those on 3 4 dap how are you obtaining this?
My neuro said yes it works
But you need to go to clinicialtrials. gov and sign up for a local trial. Of course there is none open or local to me.

You can contact Kathy Ales, MD at Jacobus pharmaceuticals. She can find an approved prescriber in your area. Her number is 609-921-7447 extension 238. Her email is
kathy.ales@jacobus-pharmaceutical.com
I got mine because I was referred to a neuromuscular specialist who,fortunately, was already a prescriber. I think your doctor can become approved, but not sure of what all hoops to jump through and paperwork, etc to get there. It may be easier to find someone in your area. These doctors are generally located in teaching hospitals.
You do not have to be in a trial to get it. There is a program called compassionate use, that provides it for those with Lems.

Thank you Limpy
I made contact with her yesterday
:)