Briefing to Incoming Minister
Rare Disorders NZ has sent a Briefing to new Minister of Health Andrew Little on behalf of the rare disorder community.
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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.
Webinar: rare disorder support group advocacy
This week advocacy expert Penny Tucker hosted a webinar to give our support groups advocacy tools.
Sign the Petition
Petition of Sue Haldane for Rare Disorders NZ: Develop a National Rare Disorder Framework
Click here to sign the Petition
Submission Template and Guidance Holidays (Increasing Sick Leave) Amendment Bill
Lisa Foster: please make a submission on the Sick Leave bill (video link) Sick leave submission - why it's important (video link) Essential Information about the Process Using the template submission: A template submission has been included in the Appendix to this document.
Rare Disorders NZ: December update
Rare is everywhere: meet Chris"I want to raise awareness in New Zealand as not many specialists have even heard of it." Fair for Rare NZ: Chief Executive's updateWhat this global pandemic has shown is that “the virus does not discriminate, but its impacts do” Antonio Guterres, United Nations Secretary General As we wind down 2020 with its disruptions, challenge and high anxiety for so many, and even more so within our own rare community, you may feel that you can only just flop over that finish line at the end of this eventful year!
Make a submission on the Sick Leave bill
Lisa Foster: please make a submission on the Sick Leave bill (video link) 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.
New strategy to accelerate diagnosis and improve treatment of rare diseases in the UK
The new framework will raise awareness of rare diseases, speed up diagnosis and improve care and treatment.
Rare disorders: Charity aiding thousands of Kiwi families fears closure (NZ Herald)
A lifeline for thousands of Kiwi families fighting crippling rare disorders fears closure due to financial woes.
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