“Southern Stars” Dancing Group

I had this great letter from Ayumi Sugimoto in Auckland.  Please read it, and if you are able to get along to see this and offer support that would be wonderful 🙂 My name is Ayumi SUGIMOTO – Originaly from Japan and have been living in Auckland since 2002. I am organaising Japanese Dance group...

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Knock Knock PHARMAC – let us in!!

Yesterday (7th June 2011) we met in Wellington to launch a campaign to get medicines for rare diseases funded in NZ. “We” includes our 4 New Zealand Pompe patients Laurie, Freda, Dean and myself, John Forman from NZORD, Jenny Noble from LDNZ, Chris Higgins and Marty Davis from MDA and...

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PHARMAC visit to Wellington

Well, it was an interesting day. Pharmac gave us 2 hours of their time. There were many things discussed. At the end of the meeting I had a chance to talk to Peter Moodie (head of Pharmac) to discuss my own application for ERT which was of course declined. He asked me what I thought about it. I...

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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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