NZORD: Pharmac proposal for change – Read it and weep?

Press Release – New Zealand Organisation for Rare Disorders Theres lots of good things going on with awareness activities and fundraisers for various support groups, and good news stories about small but dedicated teams of researchers in New Zealand making steady progress in understanding some very difficult …NZORD – the New Zealand Organisation for Rare Disorders Hello everyone, Should I cover the good news or the bad, for Rare Disease Day on Friday 28 February? There’s lots of good things going on with awareness activities and fundraisers for various support groups, and good news stories about small but dedicated teams of researchers in New Zealand making steady progress in understanding some very difficult rare diseases. Likewise, various clinical groups are working to improve care by networking to ensure more joined-up services for rare disease patients across the country, with improvements to paediatric palliative care probably the stand-out example within these new networks. Specialist labs and genetic technology are rapidly improving the chances that those with rare diseases will get an accurate diagnosis much sooner than has happened in the past, and screening programmes and advanced IVF technologies have significantly increased the number of couples who can avoid fatal or seriously disabling conditions in their next pregnancy. So why the pessimism? Why even anger? Well, just one week before rare disease day, Pharmac produced its Proposal for Change in its decision criteria following a...

Read More