Rare Disorders NZ is deeply frustrated that only minor amendments have been put forward by the Social Services and Community Committee to the Accessibility for New Zealanders Bill, ignoring the many concerns raised about the bill by the disabled community, including Rare Disorders NZ, during the select committee process.
Rare Disorders NZ has written to the Minister of Health asking her to urgently look into why no progress has been made to include spinal muscular atrophy (SMA) in the newborn screening programme, despite Pharmac approving two life-saving therapies for pre-symptomatic treatment of the degenerative disease.
New report exposes the shockingly low quantity of data available on rare disorders in New Zealand, indicating that government heath entities have no sense of the prevalence of rare disorders or the scale of their impact on the health system.
Rare Disorders NZ is extremely disappointed to learn from Pharmac’s final response to the independent Pharmac Review that the drug-buying agency is waiting for Manatū Hauora to develop its Strategy for Rare Disorders rather than take immediate action to improve assessment pathways for modern rare disorder medicines to save lives.
Basing a beer on the 90s cult movie The Big Lebowski turned out to be a winning idea for Heyday Beer Co, as they took out the top prize with their Lingonberry Pancake Ale at this year’s Rare Beer Challenge hosted by Fortune Favours on 10th March.