Spg 302

nmderek

New member
Joined
Sep 26, 2024
Messages
5
Reason
PALS
Diagnosis
09/2024
Country
US
State
NM
City
Santa Fe
FDA approved USA 200 person trial.
they said they would contact us but didn't. did anyone get in? No real results from phase two other than it was successful
 
There is no US trial at this time. There is an EAP for those who do not qualify for trials ( usually because too long from onset). If you think you qualify if spite of your fairly recent dx date ask your neurologist to apply for you. That is what it says on the website. They are charging for the drug I believe 17k a quarter and insurance would not cover
 
We reached out about the 200 person EAP and heard back that they would be in touch - never heard again. Altho we reached out prior to hearing the price tag 😳.
I’m very curious to know when data will be available from the Ph 2 study completed in Australia.
 
Back
Top