Rare Disorders NZ

Rare Disorders NZ is the connector hub and collective voice of rare disorders in New Zealand.

[Rare Disorders NZ @RareDisordersNZ]

Today we have launched a petition demanding Te Whatu Ora | Health NZ urgently engage with Rare Disorders NZ and develop an implementation plan for the Rare Disorders Strategy. Stand with rare and sign today!
https://t.co/OLZdKPW3Gg

[Rare Disorders NZ @RareDisordersNZ]

RDNZ welcomes the announcement that Steve Maharey has resigned from his position as Chair of Pharmac. RDNZ has been calling for his removal from the board after his poor handling of the internal email scandal
https://t.co/MzQTqFNoDt

[Rare Disorders NZ @RareDisordersNZ]

Have you been meaning to take the Voice of Rare Disorders Survey, but just haven't got around to it yet?
If you live in NZ, take it today to make sure your voice is heard! Survey closes today. Access it here: https://t.co/Vyuh96kLOU

[Rare Disorders NZ @RareDisordersNZ]

Together we are stronger. We need as many people living with a rare disorder in NZ as possible to take our survey, so that we can build a comprehensive picture of what it means to live with a rare disorder in Aotearoa. Survey closes on 31 October. https://t.co/Gjz4yNC2nS

[Rare Disorders NZ @RareDisordersNZ]

Do you, or does someone in your whānau, live with a rare disorder? Tell us about your journey by taking our survey and help us build a picture of the challenges facing those living with a rare disorder in NZ to encourage meaningful change. Visit https://t.co/yWwt6gD6kt

[Rare Disorders NZ @RareDisordersNZ]

The Voice of Rare Disorders Survey 2023 is now open! We hope to collect much needed data on what it means to live with a rare disorder in NZ to inform policy makers and push for meaningful change for people living with a rare disorder. Please share 🧡https://t.co/uAscQwudqu

[Rare Disorders NZ @RareDisordersNZ]

Have your say on New Zealand’s first Rare Disorders Strategy! Join one of 2 webinars hosted by the Ministry and RDNZ to share what improvements you want to see in the health system and what would make the biggest difference to your life and whānau. Visit https://t.co/RRnhpmL18P

[Rare Disorders NZ @RareDisordersNZ]

RDNZ have been in hui with Te Aka Whai Ora and Manatū Hauora and we need to engage with 50 of our Māori who live with a rare disorder, or support someone with a rare disorder, to share your whakaaro about changes you want in the health system. Email [email protected]

[Rare Disorders NZ @RareDisordersNZ]

Election 23: Responses have started coming in from political parties regarding their stance on issues important to the rare community. Check them out here on our website: https://t.co/FlSI7Iwn17

[Rare Disorders NZ @RareDisordersNZ]

People living with a rare disorder are getting lost in our health system, because their conditions and their needs are not being captured.
Our latest report by BERL highlights the strikingly low quantity of data on rare disorders in our health system https://t.co/A0lsIuogHo

[Rare Disorders NZ @RareDisordersNZ]

Independent MP Dr Elizabeth Kerekere yesterday asked Minister of Health Dr Ayesha Verrall a question in the House on what steps are being taken to improve data collection on rare disorders. You can watch this segment of question time in the video below: https://t.co/ecF2kKU5Jp

[Rare Disorders NZ @RareDisordersNZ]

New report by BERL, Rare Disorders Insights Report: Pathways towards better health outcomes, finds it's not possible to accurately estimate prevalence of rare disorders in NZ due to the low quantity of data. How can the Govt measure the need with no data? https://t.co/A0lsIuogHo

[Rare Disorders NZ @RareDisordersNZ]

Att: registered or trainee nurses in New Zealand interested in rare disorders!
Join us for this half hour webinar on 5 May to learn how you can get involved in the Global Nursing Network on Rare Diseases.
For more information go to https://t.co/245lnlyscS
Please share widely!

[Rare Disorders NZ @RareDisordersNZ]

We may be a small organisation, but as the collective voice of rare disorders in NZ we advocate on a wide range of issues that affect people living with a rare disorder. In the first 3 months of 2023 alone, we responded to 8 calls for submissions/feedback
https://t.co/ArHEcxJyQU

[Rare Disorders NZ @RareDisordersNZ]

We need YOU to help get the rare voice heard in the development of the new Pae Ora health strategies.
Join one of two webinars hosted by RDNZ and Manatū Hauora and share what would make the biggest difference to your life and whānau.
Register today: https://t.co/5NMnRGnu1Q

[Rare Disorders NZ @RareDisordersNZ]

Don’t miss this opportunity to have your say on the new Pae Ora health strategies! Rare Disorders NZ is working with Manatū Hauora to ensure the rare voice is included in the development of the Pae Ora health strategies. Register today https://t.co/5NMnRGnu1Q

[Jin Russell @DrJinRussell]

It’s Rare Disorders month. These conditions can be so rare that children and whanau can feel alone, but if you put everyone together, rare disorders affect 300,000 NZers. From my Starship team to you, lots of aroha and support 💜#GlowUpShowUp @RareDisordersNZ

[Rare Disorders NZ @RareDisordersNZ]

@DrJinRussell @Dr_Evee Thank you so much for your support @DrJinRussell and for helping raise awareness of rare disorders!

[Rare Disorders NZ @RareDisordersNZ]

Download our new parent and caregiver guide from our website https://t.co/Q0vMqgGqvd

[Rare Disorders NZ @RareDisordersNZ]

Marking Rare Disease Day this year was extra special, with the launch of our new parent and caregiver guide at Govt House. Thank you to all those who attended and a special thanks to our gracious host and patron Her Excellency, The Rt Hon Dame Cindy Kiro. #RareDisordersMonth