NZORD actively engages with rare disease issues, across the board, and one of the ways we participate is by responding to calls for submissions.
- 5 July 2018The patient voice should be included from the start to ensure equity for all people requiring pharmaceutical treatment.
- 17 May 2018People with rare disorders are more likely to experience mental stress and depression.
- 22 May 2015Our submission calls for focused action sooner, for best health gains
- 18 December 2014NZORD’s submission to the Productivity Commission
- 29 July 2014Ultra-rare patients face triple jeopardy
- 29 May 2014Once again we draw attention to suspect reasoning and moral hazards in their approach
- 20 May 2014Increasing concern at Pharmac’s intransigence and dubious reasoning
- 1 September 2013A much broader range of issues need consideration
- 1 August 2013Pharmac has failed in human rights, health legislation and ethical duties
- Changes are needed to achieve the good intent of this Bill – September 2012
- NZORD’s submission to Food Policy team at Ministry for Primary Industries – August 2012
- The need to focus on reasonable decisions related to particular patient groups – May 2012
- A call for decisive action for disadvantaged rare diseases – April 2012
- NZORD’s submission to the Privacy Commissioner – April 2012
- NZORD’s submission to the National Health Committee – November 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
- 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
- Our joint submission with LDNZ to ERMA – December 2009
- NZORD’s submission to NZ Food Safety Authority – August 2009
- Our qualified support for the planned new system
- Another submission from NZORD to the National Screening Unit - October 2008
- National Health Committee prepares advice to the Minister - July 2008
- Public health impacts of rare diseases and improved screening leadership are needed - March 2008
- Smoking impacts on health services severely limit access for rare diseases - February 2008
- NZORD's submission to the National Screening Unit - June 2007
- NZORD's submission on proposed ammendments to the Health Information Privacy Code – June 2007
- Our submission to the select committee - March 2007
- NZORD’s submission to the Government Administration Select Committee – March 2007
- Submission on the Ministry's draft guidelines - August 2006.
- NZORD submission to the Ministry of Health on Direct-to-Consumer Advertising of Prescription MedicinesIs this a problem? Our submission to the Ministry - May 2006.
- Submission on guidelines for using cells from human embryonic stem cell lines
- Time to approve research and clinical trials - May 2005
- Our submission to the Ethics committee 12 November 2004.
- We question the focus on the limited social model of disability.
- Our set of principles for consideration - June 2004
- 30 April 2004 - We identify needs for better advocacy, and clarity over right of access to services.
- September 2003 - We support the principles and the process.
- June 2003 - Our suggestions for better information and better balance in how medicine is regulated.
- Our submission on the Framework for Public Health Action, May 2003
- April 2003 - We query the evidence base and consultation process for this proposal.
- February 2003 - Exclusive emphasis on social barriers, excludes disabilities driven by disease.
- 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.
- October 2001 - NZORD calls for a plan of action to control rare genetic diseases.
- May 2002 - These cow will ensure life-saving treatments become available sooner.
- February 2002 - NZORD argues that the cap on eligible patients is in breach of the law.