The fight is still on it seems!

In a period of TOTAL annoyance (even moreso than usual) at the absolute disregard for Pompe patients in New Zealand, I decided to write to PHARMAC to see where my application for Myozyme was standing.  Please read this letter below, and also note the people to whom it was CCd.  Also included are...

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Please feel free to blog us

We really appreciate the support that we are getting from all around the world in our fight to get treatment for Pompe here in New Zealand. Thank you everyone, it’s great to know we are not alone!

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