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NZORD - Latest News [Page 1]
Rare Disorders NZ supports patient advocates
Wednesday, 21 August 2019, 1:57 pm | NZORD
Rare Disorders NZ (RDNZ) supports all people living with a chronic health condition who are brave enough to share their experiences with the media to advocate for changes in the health system. More >>
Rare Disease Day Awards 2019
Thursday, 28 February 2019, 11:34 am | NZORD
Five outstanding New Zealanders will be recognised for being rare disease champions in our community with a new award. The inaugural Rare Disease Day Awards have been established to honour and recognise ordinary people who have made a positive impact ... More >>
Treatment for families battling a devastating rare disease
Thursday, 3 May 2018, 1:41 pm | NZORD
New Zealand infants suffering from a rare neuromuscular condition may soon be eligible for compassionate access to a life-changing new medicine. More >>
7 year old girl ageing prematurely
Tuesday, 27 February 2018, 2:14 pm | NZORD
7 year old girl ageing prematurely Seven-year-old Gabrielle Stephens from Nelson is one in a million. She lives with an extremely rare and incurable genetic disorder called Dyskeratosis Congenita (DC) that affects only 7,000 people worldwide. More >>
Election Promise to Rare Disease Patients is “Off the Table"
Wednesday, 21 February 2018, 10:34 am | NZORD
The New Zealand Organisation for Rare Disorders (NZORD) is stunned that the Government is not honouring its election promise to establish a separate fund which would allow rare disease patients to access vital, life-saving medicines. More >>
NZORD calls for separate fund for people with rare disorders
Monday, 4 December 2017, 1:38 pm | NZORD
The New Zealand Organisation for Rare Disorders (NZORD) is calling on the Minister of Health to urgently establish an Orphan Drugs Fund that sits within the Ministry, operating outside PHARMAC’s current legislative requirements. More >>
NZ’s Rare Disease Organisation putting words into action
Tuesday, 8 November 2016, 2:25 pm | NZORD
The New Zealand Organisation for Rare Disorders (NZORD) aims to “improve, support, assist and promote better healthcare and well-being for patients and their families/whanau living with a rare disorder”. Our recent efforts have been focussing on improving ... More >>
Rare Disease Day 2016
Thursday, 25 February 2016, 12:29 pm | NZORD
The last day in February is fast approaching, and the New Zealand Organisation for Rare Disorders (NZORD) is gearing up to celebrate Rare Diseases Day bigger, and better than ever. This special day is dedicated to raising awareness about the many New ... More >>
NZORD - the New Zealand Organisation for Rare Disorders
Friday, 22 May 2015, 3:20 pm | NZORD
Yesterday, founder and Executive Director, John Forman, announced that he is stepping down from his current position with The New Zealand Organisation for Rare Disorders. NZORD is a not-for-profit that exists to inform and support rare disease families, ... More >>
World Birth Defects Day is launched
Tuesday, 3 March 2015, 11:24 am | NZORD
NZORD is pleased to see the development of an international effort to recognize the impact of birth defects and acknowledges the lead taken by the NZ Birth Defects Registry to fly the NZ flag in this wider network. You can join in the network by signing ... More >>
NZORD - the New Zealand Organisation for Rare Disorders
Tuesday, 24 February 2015, 3:54 pm | NZORD
February 28th is Rare Disease Day and an opportunity for those who often slip below the radar in our health system, to have some focus on their needs and interests. Getting a timely and accurate diagnosis can be one of the major hurdles they face, ... More >>
Ombudsman criticises Pharmac's approach to rare diseases
Saturday, 13 July 2013, 12:33 pm | NZORD
The Ombudsman has criticised a Pharmac decision from September 2012 on an exceptional circumstances application for a specialised medicine to treat Freda Evans who has Pompe disease. He has suggested Pharmac consider any further comments that Ms Evans ... More >>
NZORD Newsletter 2013 #3 -- 12 April 2013
Friday, 12 April 2013, 10:44 am | NZORD
In this issue: 1 – Rare Disease Day seminar focussed on medicine access for orphan diseases. 2 – Scottish government gets the message and sets up an orphan drugs access fund. 3 – Ombudsman’s report on exceptional circumstances complaint is ... More >>
Hear the voice of those with rare disorders
Thursday, 28 February 2013, 9:26 am | NZORD
Rare disease patients and their support groups are calling on the government to put in place an orphan drugs access programme, similar to those in place or being developed in most other OECD countries. They say that Pharmac is unable to manage ... More >>
It’s All About Them – Not Us
Wednesday, 30 January 2013, 3:12 pm | NZORD
NZORD - the New Zealand Organisation for Rare Disorders Press release It’s All About Them – Not Us. Supporting the Rare Gems™ in our community, NZORD, the NZ Organisation for Rare Disorders has gone in to bat for small groups supporting those ... More >>
NZORD Newsletter 2013 #1 - 28 January 2013
Monday, 28 January 2013, 11:21 am | NZORD
In this issue: 1 – Rare Disease Day is one month away. Are your plans in place? More >>
NZORD - Newsletter September 3
Wednesday, 3 October 2012, 2:50 pm | NZORD
NZORD - the New Zealand Organisation for Rare Disorders In this issue: 1 – ICORD launches Yukiwariso declaration on the need for rare disease policy and action plans. 2 – Consultation on paying family carers to provide disability support. 3 – Submission ... More >>
Minister passes the buck on folic acid
Thursday, 30 August 2012, 3:32 pm | NZORD
Up to 20 babies every year will die or be seriously disabled by neural tube defects (NTDs) in New Zealand, thanks to the Government’s decision today to keep the fortification of bread voluntary, John Forman, Executive Director of the New Zealand Organisation ... More >>
NZORD Newsletter 2012 #3 -- 7 August 2012
Wednesday, 8 August 2012, 9:28 am | NZORD
NZORD - the New Zealand Organisation for Rare Disorders In this issue: 1 – Health select committee agrees to investigate anomalies in medicine funding policies. 2 – Detailed work starts on carer payment issues and a new carers strategy action ... More >>
Rare disease patients to march on Parliament -
Monday, 7 November 2011, 9:19 pm | NZORD
Press release – for immediate release. Monday 7 November 2011. Rare disease patients to march on Parliament - We want a fair go. More >>
