Contact Us
New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Email: enquiries@nzord.org.nz
Charities Commission Registration CC22512
Press Releases and Submissions
2013
New Zealand Rare Disease Day press release – 28 February 2013
Calls for an orphan drugs access policy to overcome Pharmac’s systems failure with specialised medicines
Calls for an orphan drugs access policy to overcome Pharmac’s systems failure with specialised medicines
Rare Disease Day Seminar – 28 February 2013
Orphan drug access in the spotlight
Orphan drug access in the spotlight
Its all about them - not us
NZORD’s release about NZ Rare Disease Day – February 2013
NZORD’s release about NZ Rare Disease Day – February 2013
2012
New Zealand Rare Disease Day – 28 February 2013
Support the Rare Gems in our community
Support the Rare Gems in our community
Common themes as groups respond to Ministry consultation on payments to family carers
Disappointment at lack of sound principles contained in policy options – November 2012
Disappointment at lack of sound principles contained in policy options – November 2012
Screening criteria: the need to deal with new developments and ethical issues in newborn metabolic screening
NZORD took the lead in publishing how family interests and ethics must influence screening policy – October 2012
NZORD took the lead in publishing how family interests and ethics must influence screening policy – October 2012
Plain packs for tobacco are supported by NZORD
Less tobacco consumption will free up health dollars – October 2012
Less tobacco consumption will free up health dollars – October 2012
NZORD’s submission on the Gambling Harm Reduction Bill
Changes are needed to achieve the good intent of this Bill – September 2012
Changes are needed to achieve the good intent of this Bill – September 2012
Minister passes the buck on folic acid fortification of bread
A tragic lost opportunity to save 20 babies every year – 30 August 2012
A tragic lost opportunity to save 20 babies every year – 30 August 2012
Folic acid fortification decision due this month
NZORD’s submission to Food Policy team at Ministry for Primary Industries – August 2012
NZORD’s submission to Food Policy team at Ministry for Primary Industries – August 2012
Medicine policy anomalies need to be investigated
NZORD’s request to the Health select committee – May 2012
NZORD’s request to the Health select committee – May 2012
Submission to Pharmac on funding access criteria for special foods
The need to focus on reasonable decisions related to particular patient groups – May 2012
The need to focus on reasonable decisions related to particular patient groups – May 2012
Submission to Health select committee on the Medicines Amendment Bill
A call for decisive action for disadvantaged rare diseases – April 2012
A call for decisive action for disadvantaged rare diseases – April 2012
Support for changes to the Health Information Privacy code
NZORD’s submission to the Privacy Commissioner – April 2012
NZORD’s submission to the Privacy Commissioner – April 2012
NZORD executive director is President-elect of international rare diseases group
An important step in international collaborations – February 2012
An important step in international collaborations – February 2012
A Rare Day for Rare Diseases
Rare Disease Day 29 February 2012 – February 2012
Rare Disease Day 29 February 2012 – February 2012
2011
Responding to Ministry consultation on paediatric palliative care
Support from NZORD for better attention to a neglected specialist service – December 2011
Support from NZORD for better attention to a neglected specialist service – December 2011
An action plan for rare diseases in New Zealand?
NZORD’s submission to the National Health Committee – November 2011
NZORD’s submission to the National Health Committee – November 2011
Rare disease patients to march on Parliament
Pompe patients seeking treatment and an orphan drugs policy for NZ – November 2011
Pompe patients seeking treatment and an orphan drugs policy for NZ – November 2011
Current reviews of not-for-profit organisations by Internal Affairs and Law Commission
NZORD argues for more dialogue and a strategic approach – October 2011
NZORD argues for more dialogue and a strategic approach – October 2011
Analysis of Pharmac’s new exceptional circumstances policy
Some improvements but notable failure to deal with specialised medicines for rare diseases – August 2011
Some improvements but notable failure to deal with specialised medicines for rare diseases – August 2011
Submission to Pharmac on review of Exceptional Circumstances Scheme
Pharmac has indicated tougher rather than improved access to new medicines – March 2011
Pharmac has indicated tougher rather than improved access to new medicines – March 2011
Submission to ACART on extended storage of gametes and embryos
NZORD supports proposals but seeks clarification on consent issues – March 2011
NZORD supports proposals but seeks clarification on consent issues – March 2011
Submission to Health Select Committee on Smokefree Environments Bill
We urge strong action against a major source of disadvantage for rare disorders – February 2011
We urge strong action against a major source of disadvantage for rare disorders – February 2011
Don't donate to us, donate to them instead
Don't donate to us, donate to them instead – January 2011
Don't donate to us, donate to them instead – January 2011
2010
Minister off the hook by slimmest margin
Result of our folic acid complaint to regulations review committee – August 2010
Result of our folic acid complaint to regulations review committee – August 2010
National Health Board hits the ground running with important health initiatives
Action at last on some rare disease priorities – June 2010
Action at last on some rare disease priorities – June 2010
Time at last for filling a health regulation gap?
Ministry of Health considers controls on natural health products – May 2010
Ministry of Health considers controls on natural health products – May 2010
Submission to Maori Affairs select committee on tobacco impacts
Tobacco burden on health budget blocks rare disease health care – May 2010
Tobacco burden on health budget blocks rare disease health care – May 2010
Submission to health select committee on clinical trials
NZORD encourages an environment of innovation – April 2010
NZORD encourages an environment of innovation – April 2010
More work on access to high-cost, highly specialised medicines
Submission to the Ministerial Review Panel – March 2010
Submission to the Ministerial Review Panel – March 2010
International Rare Diseases Day arrives in New Zealand - Sunday 28 February
The Vodafone Warriors stand tall for rare disease patients – February 2010
The Vodafone Warriors stand tall for rare disease patients – February 2010
Human Rights Tribunal decision on carer payments - government appeals
Appeal against carer payments a blow for families and highlights serious problems in public sector decision-making – January 2010
Appeal against carer payments a blow for families and highlights serious problems in public sector decision-making – January 2010
2009
NZORD continues its support for AgResearch’s transgenic animals program
Our joint submission with LDNZ to ERMA – December 2009
Progress and problems with carer issues in government policy
Carers Alliance chair's report to Carers Summit – September 2009.
PGD, the Right to Choose, Disability and NZORD
Ruth Fitzgerald’s paper to the Society for Medical Anthropology Annual Meeting – September 2009
NZORD's complaint to TVNZ over folic acid coverage - August 2009
We challenge inaccurate and biased reporting that added to public concerns
Call to maintain Folic Acid standard for bread
NZORD’s submission to NZ Food Safety Authority – August 2009
Health research funding update – August 2009
Results of the HRC review and grants awarded by HRC and Marsden Fund in 2009
NZORD's submission on Health Research Council's investment consultation – March 2009
Our qualified support for the planned new system