The latest updates from RDNZ and the rare disorder community.
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.
A 44-year-old man had to be fitted with a pacemaker after he collapsed while making coffee for his wife.
The Annual General Meeting of Rare Disorders NZ will take place on Wednesday 23 September from 10-10.30am at our offices in Newtown.
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.
Last night RDNZ Chief Executive Lisa Foster attended the annual Medicines NZ dinner at Parliament. This was an opportunity to meet with policymakers and ensure the collective voice of rare disorders is included within the solutions proposed to address medicine inequity.
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.