Great news for New Zealand Pompe patients

27 February 2017

NZORD congratulates Allyson Lock, President of the NZ Pompe Network, on the recent announcement that Sanofi Genzyme has offered adult Pompe disease patients in New Zealand access to their International Compassionate Access Program (ICAP) for the drug Myozyme®.

Letitia O’Dwyer, Chief Executive of the New Zealand Organisation for Rare Disorders (NZORD), had this to say: “It’s the drive and dedication of people like Allyson that makes a difference for those individual rare disorders and support networks which although small alone, collectively make up so many. NZORD is working hard to raise awareness of all rare disorders in New Zealand; working with specialists to create clinical pathways, educating at the primary care level and driving the need for a national rare disorders registry so we can identify where the gaps are, address them and improve upon them.”