The Australian NPCD Foundation needs your help
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There are 9 known cases of NPCD in Australia that are currently recieving the drug MIGLUSTAT / ZAVESCA as a treatment option on a "compassionate use" status.
The Australian NPCD Foundation Inc and the drug company Actelon are submitting another request to the Government for PBAC (Pharmaceutical Benefits Advisory Committee) approval.
We have just been advised that we have a deadline of 5th October 2011.
Please read this statement from Mandy Jacobs, mother of 2 boys that have NPCD.
"I have two weeks today to try and convince the Australian government that the 9 patients living with NPC in Australia, having the ONLY treatment drug available currently on Compassionate Use program to prolong their lives with Npc Disease, to grant us PBAC Approval.
Yes there are only 9 of us in this nation and the Governement has failed the last 2 attempts to see that their lives are worthy of spending money on... If i fail, we risk loosing the drug in Australia for those 9 patients. two of which are my babies... :(
So If I seem a bit pissed at the world, thats why!"
Learn more about NPC www.npcd.org.au
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