The latest updates from RDNZ and the rare disorder community.
Treatment for severe rare disorder finally available, but screening is not – Rare Disorders NZ wants answers from Minister
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.
‘Blind spot’ in health system due to lack of data on rare disorders
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.
New global nursing network aims to improve health outcomes for rare patients
The network will act as a platform for nurses to share their experiences and to receive specialised education, with the vision of improving health outcomes for patients with rare diseases.
Pharmac’s ‘wait and see’ approach not good enough, says Rare Disorders NZ
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.
Call heard to #GlowUpShowUp for Rare
Aotearoa heard our call to Glow Up and Show Up for Rare during the month of March, and what a month it was!
RDNZ extremely disappointed with Pharmac’s proposal to phase out funding of food thickeners
Rare Disorders NZ has made a submission to Pharmac’s review proposal to phase out funding of food thickeners, expressing disappointment with Pharmac’s proposal.
RDNZ has made a submission to the Pae Ora Health of Disabled People Strategy
Rare Disorders NZ has made a submission to the Pae Ora Health of Disabled People Strategy.
Celebrating rarity at the Rare Beer Challenge 2023
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.
RDNZ makes submission to the Pae Ora Women’s Health Strategy
Rare Disorders NZ has made a submission to the Pae Ora Women’s Health Strategy.
Ministry of Health's plan to develop Rare Disorders Strategy
The Ministry of Health have developed an outline plan on the scope, engagement and outcomes for the national rare disorders strategy.