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NZ Organisation for Rare Disorders - Latest News [Page 2]
Newsletter: Anxious wait for Folate decision
Wednesday, 8 July 2009, 10:32 am | NZ Organisation for Rare Disorders
1 – Anxious wait for lifesaving decision about Folate in bread. 2 – Approval at last for pig-cell diabetes trial. 3 – Health Research Council 2009 funding grants. 4 – Health Ministry launches consultation on maternity action plan. 5 – Review ... More >>
NZORD Newsletter 2009 #1 -- 23 March 2009
Monday, 23 March 2009, 4:28 pm | NZ Organisation for Rare Disorders
President Obama has provided a hugely significant boost to science and health research by granting over US$10 Billion to the National Institutes of Health under the American Recovery and Reinvestment Act 2009. This is equivalent of about 30% of the NIH annual ... More >>
Medicines Strategy signals significant changes
Thursday, 24 January 2008, 12:54 am | NZ Organisation for Rare Disorders
The government’s strategy announcement Medicines New Zealand and the accompanying plan for Actioning Medicines New Zealand were greeted with disappointment by most stakeholders at the lack of immediate action to fix the most pressing issue - a serious ... More >>
NZORD Newsletter 2007 #2 -- 16 July 2007
Monday, 16 July 2007, 9:35 am | NZ Organisation for Rare Disorders
Victory in long campaign for folate fortification of food to prevent neural tube defects. - Guthrie cards - NZORD’s submission on consent, storage and use. - New consultation on policy aspects of assisted reproductive technology. - New guidelines ... More >>
NZORD Newsletter 2006 #5 -- 18 September 2006
Monday, 18 September 2006, 9:36 am | NZ Organisation for Rare Disorders
1 - Folate fortification of food is close to a decision. 2 - Proposal to increase iodised salt in commercially baked foods. 3 - Action at last on the Genetic Services report. 4 - Welcome arrival of first PGD babies. 5 - Progress from Pharmac on Growth ... More >>
NZORD Newsletter 2006 #3 -- 11 May 2006
Friday, 12 May 2006, 10:42 am | NZ Organisation for Rare Disorders
In this issue: 1 - 2006 Genethics competition for secondary school students. 2 - Good news for rare disorders in Medicines Strategy announcement. 3 - NZORD submission on Direct-to-Consumer Advertising of prescription medicines. 4 - Amended link for ... More >>
NZORD - the NZ Organisation for Rare Disorders
Thursday, 15 September 2005, 9:27 am | NZ Organisation for Rare Disorders
Yes, it’s five years since the September 2000 inaugural conference that gave the mandate to set up NZORD, and set us on the path of making a difference for those disorders and conditions that usually suffer from being “below the radar screen”. ... More >>
Time for an urgent review of Xenotransplantation
Friday, 5 August 2005, 10:17 am | NZ Organisation for Rare Disorders
Time for an urgent review of the restrictions on Xenotransplantation - Press release 5 August 2005. More >>
Children's Health Jeopardised By Vaccine Stories
Thursday, 16 June 2005, 5:22 pm | NZ Organisation for Rare Disorders
Giving such prominence to the likes of Ron Law and Barbara Sumner Burstyn's criticism of the meningococcal B vaccine is putting the health of our children at risk, says NZORD, the New Zealand Organisation for Rare Disorders. More >>
Organisation for Rare Disorders Newsletter
Wednesday, 18 May 2005, 9:58 am | NZ Organisation for Rare Disorders
1 - Good news budget announcements for health and health research. 2 - The 2005 genETHICS competition is under way. 3 - Child Health Research Foundation grants for 2005. 4 - Meningococcal B vaccine reaches 700,000 doses, and extended to South Island soon. More >>
What on Earth has Possessed Pharmac?
Monday, 16 May 2005, 12:01 am | NZ Organisation for Rare Disorders
Pharmac’s Consumer Advisory Committee put out a discussion paper early this week on health industry sponsorship of consumer health organisations. (See http://www.pharmac.co.nz/pdf/090505.pdf) This is sure to be raising eyebrows among many readers. What has possessed Pharmac ... More >>
NZORD Calls For Action On "Do-Able" Initiatives
Tuesday, 1 February 2005, 9:29 am | NZ Organisation for Rare Disorders
This is a single issue newsletter, triggered by recent media comment on the private umbilical cord blood bank. More >>
NZORD - Consultation on PGD Guidelines
Thursday, 7 October 2004, 9:55 am | NZ Organisation for Rare Disorders
At last the waiting will soon be over. Proposed guidelines for Pre-implantation Genetic Diagnosis (PGD) have been released for consultation. NZORD supports the prompt approval of this technology. In fact it is long overdue. More >>
NZORD Newsletter 2004 #5 - 3 June 2004
Thursday, 3 June 2004, 1:52 pm | NZ Organisation for Rare Disorders
In this issue: 1 - NZORD Conference 2004 a resounding success. 2 - NZORD website receives significant award. 3 - Review of Human Tissue collection and use. Submissions close Friday 4 June. More >>
Genetics and Ethics competition
Tuesday, 2 March 2004, 8:30 am | NZ Organisation for Rare Disorders
NZORD - the New Zealand Organisation for Rare Disorders NZORD and the Royal Society introduce genETHICS competition to New Zealand schools. More >>
Announcing NZORD's Conference 2004
Friday, 6 February 2004, 12:57 am | NZ Organisation for Rare Disorders
Announcing NZORD's Conference 2004 - Partnership for Progress Te Papa, Wellington Fri 28 & Sat 29 May More >>
Six Predictions for the New Year
Tuesday, 6 January 2004, 5:34 pm | NZ Organisation for Rare Disorders
Here's a summary of them with an update on the outcomes 12 months later, with accuracy scored out of ten. More >>
Organisation For Rare Disorders Newsletter
Tuesday, 18 November 2003, 11:58 am | NZ Organisation for Rare Disorders
NZORD - the New Zealand Organisation for Rare Disorders Hello everyone, In this issue: 1 - Pre-implantation Genetic Diagnosis. 2 - Pharmac consultations. 3 - Events calendar for 2004. More >>
Transgenic cow programme targets lysosomal disease
Wednesday, 17 September 2003, 8:56 am | NZ Organisation for Rare Disorders
AgResearch's transgenic cows programme will start work to produce a therapeutic protein to treat the rare lysosomal storage disease Pompe disease, as soon as issues like intellectual property are sorted out. Their decision has won praise from the patient ... More >>
Birth technology in HART Bill get it "spot on"
Thursday, 4 September 2003, 8:26 am | NZ Organisation for Rare Disorders
NZORD today presented its submission to Parliament's Health select committee on the government's proposals for regulating human assisted reproductive technology. NZORD Executive Director John Forman gave the proposals full support as drafted. He told ... More >>
