The latest updates from RDNZ and the rare disorder community.
This week advocacy expert Penny Tucker hosted a webinar to give our support groups advocacy tools.
Rare Disorders NZ hosted a stand at the New Zealand Respiratory Conference at Te Papa last week.
Last week Dr Buzz Burrell hosted a webinar focusing on managing pain for a person's own chronic health condition or on behalf of someone they support.
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