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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.
Before the general election, RDNZ asked all the major political parties for their commitment to the strategic priorities within the National Rare Disorder Framework.
Last night RDNZ Chief Executive Lisa Foster attended the annual Medicines NZ dinner at Parliament.
Meet candidates from each of the political parties and ask your questions, in person, about how they'll make NZ more 'fair for rare'.
Rare is everywhere: meet Roger"When I was growing up, I didn’t think of myself as being any different to other children until I went to intermediate." Fair for Rare NZ: Chief Executive's updateLife is full of uncertainty and change, with additional pressure on people living with rare disorders due to the shifting COVID-19 alert levels.
The RDNZ team and many people living with a rare disorder met their local MP to share their story and explain why the government must commit to the development of a National Rare Disorder Framework.
The Annual General Meeting of Rare Disorders NZ will take place on Wednesday 23 September from 10-10.30am at our offices in Newtown.
A 44-year-old man had to be fitted with a pacemaker after he collapsed while making coffee for his wife.
As diagnostic tools in medicine become ever increasingly numerous, complicated and diverse, it should be no surprise that the breadth and number of diagnoses seems to be swelling.
Rare Disorders NZ (RDNZ) supports patient advocate Fiona Tolich’s Human Rights Commission case against PHARMAC for failing to fund a rare muscular disorder drug.