The latest updates from RDNZ and the rare disorder community.
When things go really wrong they are the last line of defence for the most vulnerable, but a survey of almost 700 family carers shows how invisible and unsupported these New Zealanders have been during Covid-19.
What this global pandemic has shown is that “the virus does not discriminate, but its impacts do” Antonio Guterres, United Nations Secretary General
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.
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.
RDNZ’s Chief Executive Lisa Foster attended two major European conferences in May.
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.
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.
The Ministry of Social Development (MSD) has made some temporary changes to document requirements as part of the COVID-19 response.
You may have read about PHARMAC’S decision this week to scrap a lung cancer drug funding plan.
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.