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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.
Petition presentation rescheduled to Tuesday 13th December 2016
Our plans for a 15 November event were disrupted by the significant earthquake the day before in Wellington. Now we are set to go again on Tuesday 13 December at 12.30pm. We will gather at the Seddon Memorial. Will you join us?
Remember, any signed petition sheets should be returned to Jenny Noble by Friday 9 December so the numbers can be tallied up in time.
ERT - 3 new decisions and one more review
There is some very positive news to report this month, and some disappointment as well. LDNZ is delighted that Pharmac has approved the listing of Myozyme for infantile Pompe disease on the schedule. This is the first approval for this treatment and putting it on the schedule means that any baby diagnosed
with this disease, and who fits the treatment guidelines, will be automatically given treatment, avoiding delays and anxious waits for special consideration under the exceptional circumstances scheme. Read more.