News
The latest updates from RDNZ and the rare disorder community.
Media release: “It’s time to make the 300,000 families affected by rare disorders a health priority”
Sue Haldane, a mother of a child with a rare disorder, has spent 17 years dealing with barriers within our health system to ensure her daughter Lizzie’s needs are met. Now Sue is determined that the journey will be easier for future generations of New Zealanders living with a rare disorder.
Media release: Rare Disorders NZ welcomes the Health System Review
Rare Disorders NZ welcomes the recommendations within the New Zealand Health and Disability System Review. This Review seeks to make long term improvements which would benefit all New Zealanders including those with a rare disorder.
Report from ECRD and RDI virtual conferences
RDNZ’s Chief Executive Lisa Foster attended two major European conferences in May.
Fair for Rare NZ campaign update
Now that New Zealand is opening up after the COVID-19 lockdown, we are ready to re-ignite our collective call for fairness for people with rare disorders.
Media statement – PHARMAC’s funding increase
Rare Disorders NZ is extremely disappointed with the announcement yesterday of a pre-budget boost to PHARMAC’s funding by $160 million over four years.
MSD makes temporary changes as part of COVID-19 response
The Ministry of Social Development (MSD) has made some temporary changes to document requirements as part of the COVID-19 response.
Media statement: Recent PHARMAC funding decisions
You may have read about PHARMAC’S decision this week to scrap a lung cancer drug funding plan.
CE update - together we are strong
Here at Rare Disorders NZ we have been busy asking, listening and providing a voice to the Government to ensure the needs of people with rare disorders are included in their planning.
Media release: Rare Disorders NZ provides vital voice for vulnerable group
RDNZ commends the Government for ensuring there is a way for the rare disorder community’s concerns to be heard and needs to be met.
Resilience webinar for the rare disorder community
RDNZ hosted a short live webinar with Tracey Hancock, a Life Coach who has herself navigated through health challenges and faced her own fears.