The latest updates from RDNZ and the rare disorder community.
An article in this week's The Listener magazine highlights the challenges faced by those living with a rare disorder and the need for a National Rare Disorder Framework to address those challenges.
On Friday 29 January RDNZ’s CE Lisa Foster, alongside three support group leads, gave an oral submission to the Education and Workforce Committee on the impact of increasing sick leave for families living with a rare disorder.
The new framework will raise awareness of rare diseases, speed up diagnosis and improve care and treatment.
A lifeline for thousands of Kiwi families fighting crippling rare disorders fears closure due to financial woes.
There is an opportunity to make submissions on the extension of the sick leave bill, a positive initiative for people living with a rare disorder and their carers.
Rare Disorders NZ has sent a Briefing to new Minister of Health Andrew Little on behalf of the rare disorder community.
On Monday Dr Louise Bicknell of Otago University hosted a webinar focusing on genetics and rare disorder research.
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.