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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
2012
Rare Disease Day 29 February 2012 – February 2012
2011
Pompe patients seeking treatment and an orphan drugs policy for NZ – November 2011
NZORD argues for more dialogue and a strategic approach – October 2011
Some improvements but notable failure to deal with specialised medicines for rare diseases – August 2011
Pharmac has indicated tougher rather than improved access to new medicines – March 2011
NZORD supports proposals but seeks clarification on consent issues – March 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 – January 2011
2010
Result of our folic acid complaint to regulations review committee – August 2010
Action at last on some rare disease priorities – June 2010
Ministry of Health considers controls on natural health products – May 2010
Tobacco burden on health budget blocks rare disease health care – May 2010
NZORD encourages an environment of innovation – April 2010
Submission to the Ministerial Review Panel – March 2010
The Vodafone Warriors stand tall for rare disease patients – February 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