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NZ Organisation for Rare Disorders - Latest News [Page 1]
NZORD supports rare medicine petitions to government
Tuesday, 23 April 2019, 3:42 pm | NZ Organisation for Rare Disorders
The National Organisation for Rare Disorders (NZORD) supports petitions for more effective, equitable outcomes for people with rare disorders, as part of a comprehensive, strategic approach for this vulnerable group of over 377,000 New Zealanders, half ... More >>
Letitia O’Dwyer appointed as Chief Executive for NZORD
Thursday, 13 August 2015, 2:37 pm | NZ Organisation for Rare Disorders
NZORD is thrilled to announce the appointment of Letitia O’Dwyer as its new Chief Executive. More >>
Orphan Drug negotiations hampered by inadequate budget
Friday, 27 February 2015, 10:54 am | NZ Organisation for Rare Disorders
Pharmac’s announcement that it’s in active negotiation with 8 companies for supply of medicines for rare disorders, is welcome news for patients currently denied access to approved “orphan” medicines. But the NZ Organisation for Rare Disorders says ... More >>
Political parties back calls for a rare diseases policy
Friday, 22 August 2014, 1:06 pm | NZ Organisation for Rare Disorders
It is time for some optimism. There is now strong political support for our call for a government policy and action plan for rare disorders. In response to our survey of the seven political parties in Parliament, the Greens, Labour, Mana and NZ First ... More >>
Bakers fail miserably with bread fortification project
Tuesday, 10 June 2014, 3:36 pm | NZ Organisation for Rare Disorders
NZORD - the New Zealand Organisation for Rare Disorders When the government in 2009 first postponed, then in 2012 cancelled mandatory fortification of bread with folic acid (vitamin B9) to prevent Neural Tube Defects in babies, and instead agreed to ... More >>
Rare Disease Patients to confront Pharmac
Monday, 14 April 2014, 10:15 am | NZ Organisation for Rare Disorders
Two dozen rare disease patients and their advocates will front up to talk to Pharmac directly onTuesday 15 April in Wellington. The drug buying agency is hosting a half day consultation meeting to discuss proposed changes to their decision criteria, ... More >>
New Zealand Organisation for Rare Disorders - May Newsletter
Friday, 31 May 2013, 10:12 am | NZ Organisation for Rare Disorders
Government’s carer payment decision stuns the carer community. 2 -PNH Support Association campaigns for funded access to novel medicine. 3 – Exciting developments at international rare disease research consortium. 4 – Big steps forward on non-communicable diseases ... More >>
NZ Organisation for Rare Disorders Column
Tuesday, 26 February 2013, 11:35 am | NZ Organisation for Rare Disorders
We are thrilled at the energy and imagination of so many families around the country, and delighted at the willingness of corporate groups to get into the action to support the cause. More >>
NZORD - Newsletter June 5
Tuesday, 5 June 2012, 1:15 pm | NZ Organisation for Rare Disorders
NZORD - the New Zealand Organisation for Rare Disorders In this issue: 1 – Folic acid fortification of bread is on the agenda again. 2 – Submission on proposed changes to the Health Information Privacy code. 3 – NZORD asks Health select committee ... More >>
NZORD - the New Zealand Organisation for Rare Disorders
Tuesday, 15 May 2012, 10:49 am | NZ Organisation for Rare Disorders
The government’s announcement of a $2 hike in prescription charges next year is more than enough to cover the expected cost of specialised medicines for rare “orphan” diseases, says the NZ Organisation for Rare Disorders. More >>
NZORD executive director becomes President-elect of ICORD
Wednesday, 29 February 2012, 9:52 am | NZ Organisation for Rare Disorders
NZORD - the New Zealand Organisation for Rare Disorders This announcement is made to coincide with Rare Disease Day on Wednesday 29 February 2012. NZORD executive director John Forman has become President-elect of ICORD www.icord.se an International ... More >>
A Rare Day for Rare Diseases
Wednesday, 8 February 2012, 4:44 pm | NZ Organisation for Rare Disorders
Wednesday 29 February is a once in 1461 days occurrence. The extra day in a leap-year. And it is NZ Rare Disease Day. Most rare diseases occur much less frequently than leap-days. One in 2000 to one in hundreds of thousands is the pattern for more than ... More >>
Campaign for an orphan diseases policy goes to the Beehive
Tuesday, 18 October 2011, 2:31 pm | NZ Organisation for Rare Disorders
NZORD - the New Zealand Organisation for Rare Disorders Patients with rare neuromuscular Pompe disease took their case to the Beehive today to seek the intervention of the Prime Minister in ensuring access to the treatment needed to stop the progression ... More >>
Access to Enzyme Replacement Therapy for Lysosomal Diseases
Tuesday, 7 June 2011, 12:56 pm | NZ Organisation for Rare Disorders
The recent review of Pharmac’s exceptional circumstances scheme indicates a tougher stance by Pharmac, rather than improved access. More >>
Quake spurs charity to hold back on rare disease day
Thursday, 24 February 2011, 9:42 am | NZ Organisation for Rare Disorders
It has been a dilemma deciding what to do about our planned final publicity push to promote NZ Rare Disease Day on Monday 28 February. NZORD feels that in the light of the scale of Christchurch’s tragic earthquake, we are reluctant to engage in ... More >>
NZORD "don't donate to us, donate to them instead"
Wednesday, 2 February 2011, 2:09 pm | NZ Organisation for Rare Disorders
In a novel twist to charitable fundraising, NZORD is not seeking funds for its own organisation. Instead NZORD is promoting New Zealand Rare Disease Day on Monday 28 February 2011 as an opportunity for the public to donate to one of more than 140 ... More >>
NZORD - December Newsletter
Thursday, 23 December 2010, 3:04 pm | NZ Organisation for Rare Disorders
NZORD - the New Zealand Organisation for Rare Disorders In this issue: 1 – National Health Board confirms national services and service improvement programmes. 2 – Good news in High Court decision on payments to carers, but government signals another ... More >>
Minister off the hook by slimmest margin
Wednesday, 4 August 2010, 4:16 pm | NZ Organisation for Rare Disorders
Food Safety Minister Kate Wilkinson has won a challenge against her decision last year to block the mandatory fortification of bread with Folic acid, the synthetic form of dietary folate, also known as vitamin B9, but she has been let off the hook ... More >>
International Rare Diseases Day arrives in NZ
Tuesday, 23 February 2010, 12:05 pm | NZ Organisation for Rare Disorders
· Rare skin blistering disease Epidermolysis Bullosa carries the flag for all rare diseases at the Vodafone Warriors carnival week. More >>
Complaint against TVNZ over folic acid coverage
Wednesday, 19 August 2009, 3:17 pm | NZ Organisation for Rare Disorders
NZORD has filed a complaint with Television New Zealand about their coverage of plans to fortify bread with folic acid. The complaint is against several TVNZ programmes from 12th to 14th July 2009 and alleges a failure to meet standards in the Broadcasting ... More >>
