The latest updates from RDNZ and the rare disorder community. 

Nov 24, 2020, 1:29 PM
Webinar: Finding a needle in the haystack: a genetic diagnosis for a one-in-a-million condition

On Monday Dr Louise Bicknell of Otago University hosted a webinar focusing on genetics and rare disorder research.

Nov 11, 2020, 1:42 PM
Webinar: rare disorder support group advocacy

This week advocacy expert Penny Tucker hosted a webinar to give our support groups advocacy tools.

Nov 8, 2020, 2:28 PM
Promoting awareness of rare disorders

Rare Disorders NZ hosted a stand at the New Zealand Respiratory Conference at Te Papa last week.

Oct 18, 2020, 4:09 PM
Webinar: pain management for rare disorders

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.

Sep 16, 2020, 6:56 PM
Media release: Rare Disorders NZ supports Human Rights Commission case against PHARMAC

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.

Aug 25, 2020, 4:25 PM
Auckland 44yo fitted with pacemaker due to rare disease now fighting for others

A 44-year-old man had to be fitted with a pacemaker after he collapsed while making coffee for his wife.

Aug 24, 2020, 3:08 PM
Rare Disorders NZ AGM

The Annual General Meeting of Rare Disorders NZ will take place on Wednesday 23 September from 10-10.30am at our offices in Newtown.

Aug 11, 2020, 4:30 PM
Rare diseases - is something so common really so rare?

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.

Jul 29, 2020, 6:33 PM
Medicines NZ Parliamentary Dinner

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.

Jul 8, 2020, 6:12 PM
Caring in lockdown: Forgotten families during Covid-19

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.