News and press releases
- 15 October 2017A Christchurch teenager is struggling to come to terms with a newly-diagnosed rare and deadly auto-immune disease that attacks his heart.
- 6 October 2017New support group for the rare disease Dyskeratosis Congenita (DC) added to NZORD’s Rare Disease Support Group Directory
- 5 October 2017Major international conference on a rare genetic skin condition to be held in Wellington later this year
- 19 September 2017NZORD Chief Executive Dr Collette Bromhead says that Pharmac's decisions on funding are still made on value for money, rather than value for patients.
- 5 September 2017Share your exceptional, beautiful, unique style for Rare Disease Day
- 26 August 2017Proposals required by 8 Sept. for potential new supply to NZ market of enzyme replacement treatment for Gaucher disease
- 24 August 2017For those of Asian descent in the rare disorder community. Find out about NZ health system, the role of your doctor and what else is available!
- 21 August 2017Check out the new strategy for carer respite bringing choice, control and flexibility to respite supports
- 1 August 2017Read a doctor's personal journey with his daughter's rare disorder
- 9 May 2017NZORD CE Letitia O’Dwyer to leave organisation for role of CE of Asthma and Respiratory Foundation NZ
- 1 May 2017Support NZORD by buying tickets to win a cake
- 27 February 2017Sanofi Genzyme offers access to International Compassionate Access Program for Myozyme
- 18 January 2017Chris Higgins replaces Lucy Elwood as NZORD Chairperson
- 8 November 2016NZ’s Rare Disease Organisation putting words into action
- 27 October 2016NZORD supports the listing of alglucosidase alfa (Myozyme) but recommends that late-onset Pompe disease (LOPD) treatment be funded
- 19 September 2016Join the NZORD team at Lighthouse Cuba on Mon. 17 Oct. for a screening of Girl on the Train
- 4 August 2016New support group for undiagnosed conditions
- 18 July 2016Find us at the corner of Taranaki St and Vivian St
- 28 June 2016Report looks into the health impacts of mandatory folic acid and iodine fortication
- 27 June 2016Read NZORD’s strategic work plan 2016–2017
- 1 June 2016Bread Industry makes some progress with folic acid fortification and NZORD continues to advocate for more progress
- 19 May 2016Pharmac approves funding for another two medicines for rare disorders
- 18 May 2016Letitia O’Dwyer and Daniel Webby present the results of the recent NZORD survey of GPs
- 12 April 2016MyCare is a new online space for those seeking or offering home-based support
- 22 January 2016Study looking for families who have a child with an undiagnosed neurodevelopmental condition
- 9 November 2015NZORD’s 2015 Annual Report available for download
- 16 September 2015Rare disorders process yields first funding decision
- 13 August 2015NZORD is thrilled to announce the appointment of Letitia O’Dwyer as its new Chief Executive
- 12 June 2015Today is John Forman's last day as our Executive Director
- 22 May 2015NZORD Chair thanks departing executive director
- 15 March 2015Dr Cathy Stephenson urges government reconsideration
- 3 March 2015Time for action on prevention and care
- 27 February 2015Orphan Drug negotiations hampered by a seriously inadequate budget
- 24 February 2015Rare Disease Day highlights the orphans in our health system
- 10 February 2015
- 30 October 2014Video series launched
- 29 September 2014Life without Limits
- 29 August 2014New policy decision
- 22 August 2014Political parties back calls for a rare diseases policy and action plan
- 18 July 2014Serious flaws in rare disorders medicine fund proposal
- 16 July 2014NZORD seeking new Trustees
- 26 June 2014How will the political parties respond to these 7 questions?
- 11 June 2014Babies die as bakers fail miserably with bread fortification project
- 9 June 2014An important rare disease policy event
- 30 May 2014A very troubling approach, unbecoming of a public sector agency
- 1 May 2014
- 13 April 2014
- 28 February 2014Read their draft decision framework, and weep?
- 14 February 2014Hear from University of Otago researchers about their work with rare diseases
- 12 November 2013Lunch, plus discussion on current issues.
- 2 September 2013We challenge their approach. Some matters are mandatory and not discretionary considerations
- 26 July 2013Last chance for rare diseases? – 1 August 2013
- 12 July 2013Review of this decision and decision criteria should occur – July 2013
- 4 July 2013More problems with medicines decision making
- 1 June 2013Big implications for funding of treatments for rare diseases
- 2 May 2013Another rare disease group to be abandoned by our health system?
- 1 May 2013It is one step forward and two back
- Orphan drug access in the spotlight
- NZORD’s release about NZ Rare Disease Day – February 2013
- Support the Rare Gems in our community
- 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 screeningNZORD took the lead in publishing how family interests and ethics must influence screening policy – October 2012
- Less tobacco consumption will free up health dollars – October 2012
- A tragic lost opportunity to save 20 babies every year – 30 August 2012
- An important step in international collaborations – February 2012
- Rare Disease Day 29 February 2012 – February 2012
- NZORD’s request to the Health select committee – May 2012
- Support from NZORD for better attention to a neglected specialist service – December 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
- Don't donate to us, donate to them instead – January 2011
- 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
- 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
- 16 September 2009Carers Alliance chair's report to Carers Summit
- 1 September 2009Ruth Fitzgerald’s paper to the Society for Medical Anthropology Annual Meeting
- Results of the HRC review and grants awarded by HRC and Marsden Fund in 2009
- We challenge inaccurate and biased reporting that added to public concerns
- Design a poster about designing a child
- Central policy initiative on rare disorders - March 2008
- Commentary on a good lobbying result but still more to do - January 2008.
- Dr Marie Bismark reports on the WHO/IAPO meeting - November 2007
- Lam Nguyen, Nelson College for Girls
- Guthrie blood spot cards. How long should they be stored and who can access them?
- Our support for this important public health measure - September 2006.
- Sasha Srivastava, Otago Girls' High School
- Our priorities for rare disorders - May 2006
- Babies' best interests or mothers' choice? Which should prevail?
- The International Genetic Alliance Statement - March 2006
- Commentary - 20 December 2005
- Press Release - 24 November 2005
- Press Release, 14 September 2005
- Press Release, 5 August 2005
- Daphne Cohen, Hutt Valley High School.
- Press Release, 16 May 2005
- NZORD calls for a sharper focus on the core objective - May 2005
- NZORD calls for integration of health and disability services - May 2005
- --not listed--
- Commentary - 29 April 2005
- Commentary - 29 April 2005
- Ministry of Health response to our call for action - March 2005
- Private provision is not the way to go - January 2005
- The need for a rare disease policy framework - Press Release, 31 January 2005
- --not listed--
- Your chance to discuss ethical decision making - December 2004
- One of many pressing issues in child health - Press Release, 21 October 2004
- NZORD urges prompt action to improve the health of babies - August 2004
- What I did with my funds. John Forman reports - July 2004.
- Press Statement, 1 March 2004
- Guest editorial - 29 January 2004
- 12 January 2004 - Our view among 14 articles from various authors
- Press Statement, 19 December 2003
- What were the outcomes.
- Commentary on the ethical issues, November 2003
- Press Statement, 16 September 2003
- Press Statement/Commentary, 15 August 2003
- Press Statement, 24 July 2003
- Press Statement, 22 May 2003
- May 2003 - Report from the conference and AGM of the Cystic Fibrosis Association.
- 29 April 2003 - Full text of a statement from the Paediatric Society and the Royal Australasian College of Physicians.
- Press Statement, 30 December 2002
- Meeting the Care and Support Needs of Young People with Complex and Chronic Health and Disability Needs as they Approach Adulthood
- Transcript of a presentation by John Forman to the 13th World Congress of Inclusion International, Melbourne, 23 September, 2002
- Press Statement, 5 August 2002
- 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.
- Press Statement, 30 July 2001
- Implications of genetic modification for the health of children: article for “Children” magazine
- Press statement, 5 June 2001