How you can help Pompe patients in New Zealand
Currently we are unable to get Enzyme Replacement Therapy funded by our government here in New Zealand for Pompe Disease. We have embarked on a campaign to try and get our government to change this so that we can have access to these medicines, which will allow us to have a longer and better quality life.
After the recent launch of our campaign we have had many people ask how they can help us. The support from the wider community has been absolutely wonderful and we thank each and every one of you.
We would very much appreciate it if you could email your thoughts on how you feel about access to these treatments. But first, could we encourage you to watch, read and listen to our personal stories on the links posted below or you can view these through our "News" page.
After the recent launch of our campaign we have had many people ask how they can help us. The support from the wider community has been absolutely wonderful and we thank each and every one of you.
We would very much appreciate it if you could email your thoughts on how you feel about access to these treatments. But first, could we encourage you to watch, read and listen to our personal stories on the links posted below or you can view these through our "News" page.
The links for the various items we have done...
http://www.radionz.co.nz/national/programmes/ninetonoon/20110607
http://www.radionz.co.nz/national/programmes/checkpoint
scroll down to 17:55 People with rare disorders campaign for better drug deal
http://tvnz.co.nz/close-up/tuesday-june-7-4211048/video
http://www.stuff.co.nz/dominion-post/news/5111612/Drugs-for-rare-diseases-may-not-be-funded
Once you have watched and listened to these items could I ask you to please email your personal thoughts and comments regarding these media items to the below email addresses. Could you put the Government addresses into the "To" field, the media addresses into the "CC" field and us at NZPN in the "CC" field also. It would be good if the politicians and Pharmac see that everything is also going to the media. I thank you in anticipation.
Government
In the "To" field
b.english@ministers.govt.nz. - The Prime Minister Bill English
j.coleman@ministers.govt.nz - Minister of Health Dr Jonathan Coleman
steffan.crausaz@pharmac.govt.nz - Chief Executive of Pharmac Steffan Crausaz
john.wyeth@pharmac.govt.nz - Medical Director of Pharmac Dr John Wyeth
Media
In the "CC" field
Gill.Higgins@tvnz.co.nz
rnz@radionz.co.nz
newsroom@stuff.co.nz
tekaea@maoritelevision.com
And to us in the "CC" field
nz.pompe@gmail.com
When writing your email would you also please address your email to:
Prime Minister Bill English, Health Minister Dr Jonathon Coleman and Mr Crausaz
E.g.
Dear Prime Minister Bill English, Hon Dr Jonathon Coleman, Dr John Wyeth
I am writing to you….etc
.....................................................................
http://www.radionz.co.nz/national/programmes/ninetonoon/20110607
http://www.radionz.co.nz/national/programmes/checkpoint
scroll down to 17:55 People with rare disorders campaign for better drug deal
http://tvnz.co.nz/close-up/tuesday-june-7-4211048/video
http://www.stuff.co.nz/dominion-post/news/5111612/Drugs-for-rare-diseases-may-not-be-funded
Once you have watched and listened to these items could I ask you to please email your personal thoughts and comments regarding these media items to the below email addresses. Could you put the Government addresses into the "To" field, the media addresses into the "CC" field and us at NZPN in the "CC" field also. It would be good if the politicians and Pharmac see that everything is also going to the media. I thank you in anticipation.
Government
In the "To" field
b.english@ministers.govt.nz. - The Prime Minister Bill English
j.coleman@ministers.govt.nz - Minister of Health Dr Jonathan Coleman
steffan.crausaz@pharmac.govt.nz - Chief Executive of Pharmac Steffan Crausaz
john.wyeth@pharmac.govt.nz - Medical Director of Pharmac Dr John Wyeth
Media
In the "CC" field
Gill.Higgins@tvnz.co.nz
rnz@radionz.co.nz
newsroom@stuff.co.nz
tekaea@maoritelevision.com
And to us in the "CC" field
nz.pompe@gmail.com
When writing your email would you also please address your email to:
Prime Minister Bill English, Health Minister Dr Jonathon Coleman and Mr Crausaz
E.g.
Dear Prime Minister Bill English, Hon Dr Jonathon Coleman, Dr John Wyeth
I am writing to you….etc
.....................................................................