April 2017 newsletter
Here is the link to our very latest newsletter.
Pharma Company gives up on Pharmac
After many years of advocacy and Genzyme trying to work with Pharmac to fund Myozyme for our NZ patients with Pompe disease, the company has finally given up and is compassionately funding four Pompe patients. Read our press release.
13th December 2016 Petition Delivered to Government
Samantha Lenik and patients with Pompe and Fabry disease and their supporters delivered the petition to the government yesterday requesting that the government look under urgency to ensure Pharmac has enough funds to properly deliver on the rare disease drug policy. Read more here.