2007

International meeting on medicine access
Dr Marie Bismark reports on the WHO/IAPO meeting - November 2007
genETHICS 2007 competition - winner's essay
Lam Nguyen, Nelson College for Girls
Storage and use of Guthrie card blood spots
NZORD's submission to the National Screening Unit - June 2007
Genetic information and privacy code changes
NZORD's submission on proposed ammendments to the Health Information Privacy Code – June 2007
Genethics 2007 competition
Guthrie blood spot cards. How long should they be stored and who can access them?
Strong support for joint medicines agency and regulation of complementary medicines
NZORD’s submission to the Government Administration Select Committee – March 2007
Human Tissue Bill
Our submission to the select committee - March 2007

2006

Folate fortification of food
Our support for this important public health measure - September 2006.
The use of human tissue for unspecified future research
Submission on the Ministry's draft guidelines - August 2006.
NZORD's briefing to Health Minister Pete Hodgson
Our priorities for rare disorders - May 2006
genETHICS 2006 competition - winner's essay
Sasha Srivastava, Otago Girls' High School
Direct-to-Consumer Advertising of Prescription Medicines
Is this a problem? Our submission to the Ministry - May 2006.
Genethics 2006 Competition scenario - May 2006
Babies' best interests or mothers' choice? Which should prevail?
Submission on Using Stem Cell Lines for Research - March 2006
Submission on guidelines for using cells from human embryonic stem cell lines
Policy Statement on Rare Diseases
The International Genetic Alliance Statement - March 2006

2005

PGD funding is approved - A tremendous step forward for control of inherited diseases.
Commentary - 20 December 2005
Access to Medicines Coalition Launched - Seeking a better deal for all New Zealanders.
Press Release - 24 November 2005
NZORD turns 5 - Our achievements since 2000.
Press Release, 14 September 2005
genETHICS 2005 competition - winner's essay August 2005
Daphne Cohen, Hutt Valley High School.
Xenotransplantation progress - Time for a review of research restrictions
Press Release, 5 August 2005
Meeting the needs of people with chronic conditions
NZORD calls for integration of health and disability services - May 2005
Review of Pharmac's Operational Policies and Procedures
NZORD calls for a sharper focus on the core objective - May 2005
Submission to the Bioethics Council on Xenotransplantation
Time to approve research and clinical trials - May 2005
Industry Funding of Support Groups Under Scrutiny - What on Earth has Possessed Pharmac?
Press Release, 16 May 2005
Can we have confidence in Pharmac?
Commentary - 29 April 2005
PGD guidelines approved at last - What was all the fuss about?
Commentary - 29 April 2005
Some Good News, and Some Not So Good
Ministry of Health response to our call for action - March 2005
Same Issue, Different Year
The need for a rare disease policy framework - Press Release, 31 January 2005
Umbilical Cord Blood Banking
Private provision is not the way to go - January 2005

2004

Recruiting research participants
Your chance to discuss ethical decision making - December 2004
PGD Draft Guidelines released
Our submission to the Ethics committee 12 November 2004.
HIV and pregnancy - to test or not to test?
One of many pressing issues in child health - Press Release, 21 October 2004
Reducing Neural Tube Defects
NZORD urges prompt action to improve the health of babies - August 2004
Another Social Entrepreneur Grant
What I did with my funds. John Forman reports - July 2004.
Submission on Health Research Council's disability research priorities - July 2004
We question the focus on the limited social model of disability.
Submission on the Ministry of Health review of Human Tissue Regulation
Our set of principles for consideration - June 2004
Submission on the H&D Commissioner's Act and Code of Rights review
30 April 2004 - We identify needs for better advocacy, and clarity over right of access to services.
NZORD and Royal Society introduce genETHICS competition to New Zealand schools
Press Statement, 1 March 2004
Bioethics in 2004 - Our challenge for the year
Guest editorial - 29 January 2004
NZORD contributes to Bioethics Council publication on Transgenics
12 January 2004 - Our view among 14 articles from various authors

2003

NZORD welcomes report on Molecular Genetic Testing
Press Statement, 19 December 2003
Pre-implantation Genetic Diagnosis
Commentary on the ethical issues, November 2003
Submission to Health select committee on Human Assisted Reproductive Technology Bill
September 2003 - We support the principles and the process.
Review of NZORD's 2003 predictions - December 2003
What were the outcomes.
Transgenic programme to target rare Lysosomal disease
Press Statement, 16 September 2003
Behind the headlines on the variant CJD scare - some thoughts on the other tragedies involved
Press Statement/Commentary, 15 August 2003
NZORD calls for action on crisis in paediatric neurology services
Press Statement, 24 July 2003
Submission to Ministerial Committee on Complementary and Alternative Health
June 2003 - Our suggestions for better information and better balance in how medicine is regulated.
NZORD welcomes AgResearch transgenic funding boost
Press Statement, 22 May 2003
Cystic Fibrosis Association confirms pro-GE stance
May 2003 - Report from the conference and AGM of the Cystic Fibrosis Association.
Submission on Pharmac's proposal to delist gluten-free foods
April 2003 - We query the evidence base and consultation process for this proposal.
NZORD calls for genetics to be incorporated into public health planning
Our submission on the Framework for Public Health Action, May 2003
Starship name change a smokescreen
29 April 2003 - Full text of a statement from the Paediatric Society and the Royal Australasian College of Physicians.
Submission to the Health Reseach Council on disability research priorities
February 2003 - Exclusive emphasis on social barriers, excludes disabilities driven by disease.

2002

NZORD's predictions for the New Year
Press Statement, 30 December 2002
Position statement - on transition from paediatric to adult health services, for those with rare and complex disorders
Nov 2002 - NZORD worked with the Paediatric Society to develop this statement calling for better care management.
Commentary on Pharmac's decision to fund Glivec
Nov 2002 - What were the factors that lead to the decision to fund Glivec for Chronic Meyeloid Leukaemia, and what are the implications for other rare diseases?
Submission to MoRST on the NZ Biotechnology Strategy
November 2002 - Our submission to the Ministry of Research, Science and Technology, supporting the strategy but calling for more focus on the control of rare diseases.
The Genome and Medical Matters
Transcript of a presentation by John Forman to the 13th World Congress of Inclusion International, Melbourne, 23 September, 2002
NZORD supports AgResearch's transgenic cows application
Press Statement, 5 August 2002
Submission to ERMA supporting AgResearch's Transgenic Cows application
May 2002 - These cow will ensure life-saving treatments become available sooner.
GM/GE Implications for Treatment of Muscular Dystrophy.
A letter to the Editor of "In Touch" the magazine of the Muscular Dystrophy Association of NZ - April 2002 - A treatment is close for one form of MD.
Submission to Pharmac on Beta-Interferon for Multiple Sclerosis
February 2002 - NZORD argues that the cap on eligible patients is in breach of the law.

2001

Submission on the Public Health Strategy and Action Plan
October 2001 - NZORD calls for a plan of action to control rare genetic diseases.
Patient Advocacy Group Welcomes Royal Commission's Recommendations
Press Statement, 30 July 2001
Implications of GM for the health of children
Article for "Children" the magazine of the Commissioner for Children - June 2001
New Zealand Organisation for Rare Disorders is established
Press statement, 5 June 2001