News and press releases
- 10 July 2018A science student is running her first marathon to raise money for NZORD and the rare disorder community.
- 9 July 2018We have signed a new three-year contract with the Ministry of Health, with reduced funding each year.
- 5 July 2018NZORD attended this event in June which offered an inspiring line-up of speakers with broad expertise in researching and then commercialising ground-breaking approaches to health technology.
- 4 July 2018A letter outlining the Minister of Health’s expectations for PHARMAC includes a focus on rare disorders medicines.
- 3 July 2018Do you want to set up a rare disorder support group but are not sure where to start? NZORD can help.
- 2 July 2018NZORD is pleased to report that PHARMAC is inviting pharmaceutical suppliers to submit funding applications for medicines for rare disorders.
- 8 June 2018To recognise and encourage future rare disease researchers, NZORD will this year sponsor prizes for the best student presentations at the Queenstown Satellite Meeting on Rare Brain Diseases.
- 8 June 2018PHARMAC is visiting towns across New Zealand to get feedback on the role of consumer voice in the work that they do.
- 31 May 2018A UK report highlights the huge impact on emotional wellbeing and mental health of living with a rare disease.
- 30 May 2018PHARMAC has released a consultation regarding proposed changes to the funded enzyme replacement therapy (ERT) for patients with Gaucher disease.
- 29 May 2018NZORD has received letters of support from international patient groups.
- 16 May 2018A mother of a young boy with a rare disease spoke to Kate Hawkesby on Newstalk ZB about the need NZORD fills in the community.
- 14 May 2018I am writing with my serious concerns relating to the Ministry of Health’s funding of the New Zealand Organisation for Rare Disorders (NZORD).
- 10 May 2018Freda Evans, an Auckland mother with Pompe disease, shares her story of battling for treatment for more than 30 years.
- 3 May 2018New Zealand infants suffering from a rare neuromuscular condition may soon be eligible for compassionate access to a life-changing new medicine.
- 1 May 2018Scientists based at the University of Barcelona in Spain have discovered a potential cure for a rare disease without any previous treatment options.
- 17 April 2018NZORD attended a meeting of the Carers Alliance at Parliament last week.
- 10 April 2018Last week NZORD’s Relationship Manager Lisa Crawford was able to speak directly to the Minister of Health, Dr David Clark.
- 29 March 2018NZ Pompe Network worked tirelessly to make this conference a reality and bring together all communities of interest for Pompe disease.
- 28 March 2018The Government has committed to setting up an inquiry into mental health as part of its first 100 days’ work programme.
- 27 March 2018The New Zealand Pompe Network has called on the new Government to honour its election pledge to establish a separate fund for rare diseases like Pompe Disease.
- 15 March 2018NZORD’s Relationship Manager Lisa Crawford recently attended two conferences focusing on health and communities.
- 7 March 2018NZORD is seeking a meeting with the Minister of Health, David Clark, to follow up a number of points discussed in a recent interview on Radio New Zealand.
- 6 March 2018Two lucky winners have won very special dining experiences in our Rare Disease Day raffle.
- 28 February 2018Seven-year-old Gabrielle Stephens from Nelson is one in a million. She lives with an extremely rare and incurable genetic disorder called Dyskeratosis Congenita (DC) that affects only 7,000 people worldwide.
- 27 February 2018NZORD’s Chief Executive Dr Collette Bromhead went head- to-head with Health Minister David Clark during an interview on Radio New Zealand’s Nine to Noon programme last week about funding for rare diseases.
- 20 February 2018The New Zealand Organisation for Rare Disorders (NZORD) is stunned that the Government is not honouring its election promise to establish a separate fund which would allow rare disease patients to access vital, life-saving medicines.
- 19 February 2018It is with great pleasure that the Australian and New Zealand Prader-Willi Syndrome Associations invite you to Brisbane in October 2018, to the fourth Asia Pacific Prader-Willi Syndrome Conference.
- 8 February 2018We are currently in discussions with the Ministry of Health National Screening Unit (NSU) team regarding the proposed termination of our contract with them.
- 2 February 2018Buying tickets helps support people with rare disorders in your community.
- 16 January 2018A new support group has been set up following a Christchurch woman’s experience of a rare skin disease.
- 19 December 2017NZORD’s recent enquiries service survey shows that people who contact our organisation are satisfied with the information and support they receive.
- 11 December 2017All babies born in New Zealand will now be screened for a rare immune disorder soon after birth.
- 4 December 2017The New Zealand Organisation for Rare Disorders (NZORD) is calling on the Minister of Health to urgently establish an Orphan Drugs Fund that sits within the Ministry, operating outside PHARMAC’s current legislative requirements.
- 4 December 2017NZORD recommends three initiatives to benefit people with rare disorders in New Zealand.
- 30 November 2017NZORD's highlights from the recent Epidermolysis Bullosa conference in Wellington.
- 20 November 2017A Gisborne family struggling with a recently diagnosed rare disorder have received funding support from their local Freemasons charity.
- 2 November 2017Proposal to fund medication used to control some forms of epilepsy and neuropathic pain
- 1 November 2017NZORD is delighted to announce the Poster Child for Rare Disease Day 2018 - Gabrielle from Nelson.
- 24 October 2017Spinal Muscular Atrophy (SMA) is a rare disorder affecting the part of the nervous system that controls voluntary muscle movement.
- 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
- Less tobacco consumption will free up health dollars – October 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
- 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
- We challenge inaccurate and biased reporting that added to public concerns
- Results of the HRC review and grants awarded by HRC and Marsden Fund in 2009
- 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
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- NZORD calls for a sharper focus on the core objective - May 2005
- NZORD calls for integration of health and disability services - May 2005
- 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