NZORD - Latest News [Page 1]

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 >>

Appeal over decision to deny funding for rare disease?

Wednesday, 14 September 2011, 10:00 am | NZORD

Three patient advocacy groups have won a concession from Pharmac who will consider at their 27 September board meeting an appeal against their earlier decision to decline funding for Myozyme, a specialised enzyme replacement therapy. Myozyme treats Pompe ... More >>

 

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