A Call to Action to all Lysosomal Families

19 July 2013

In our latest newsletter said that we would be getting back to you with a request to make submissions to Pharmac on their intent to decline funding for the drug Soliris for patients with PNH http://www.pnhsanz.org.nz/

I also indicated that should Pharmac get good support from the public to decline this treatment it would effectively shut the door to all rare disease therapies including our Lysosomal enzymes. We cannot let that happen.

Attached is my submission to Pharmac with some key messages. I am encouraging you all to make a submission using the attachment or take extracts out of it and put it into your own words. We want to flood Pharmac with submissions that tell them clearly that we do not support their intent to decline Soliris.

To read more about this proposal from Pharmac http://www.pharmac.health.nz/news/item/proposal-to-decline-a-funding-application-for-eculizumab

Submissions close on Wednesday 31st July and must be sent to

Email: eculizumabfeedback@pharmac.govt.nz

LDNZ 12 year report

LDNZ 12 year report (pdf file)

This report highlights our achievements over 12 years and looks at other aspects of our work in improvements to health and disability services and much more. Some of our families share their stories and we salute the pioneers who came before us.

WORLD Lysosomal Symposium 12–15 Feb 2013, Orlando, Florida, USA

19 January 2013

For more information and to register for this meeting click here.