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.
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Fair for Rare NZ
Campaign resources
RDNZ has created resources to enable all people living with a rare disorder and their whanau to share their own story and support the Fair for Rare NZ campaign.
Meet your MP
The 2020 general election has seen new representatives in many electorates.
Report from ECRD and RDI virtual conferences
RDNZ’s Chief Executive Lisa Foster attended two major European conferences in May.
Media release: Rare Disorders NZ welcomes the Health System Review
Rare Disorders NZ (RDNZ) welcomes the recommendations within the New Zealand Health and Disability System Review.
Rare Disorders NZ: June update
Rare is everywhere: meet Lizzie"I would make no changes to Lizzie’s lovely self, but I crave many, many changes to the world she lives in." Fair for Rare NZ: Chief Executive's updateCovid-19 has changed everyone’s perception of the significance of societal health and wellbeing.
GoCloud Systems
We're grateful to have the support of GoCloud systems to help us communicate with the rare disorder community effectively.
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.
RDI Statement on COVID-19 response and recovery
What this global pandemic has shown is that “the virus does not discriminate, but its impacts do” Antonio Guterres, United Nations Secretary General Rare Diseases International (RDI) wishes to bring to the urgent attention of policy makers and authorities the increased vulnerability that the 300 million people living with a rare disease (PLWRD) worldwide are facing during the COVID-19 pandemic.