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NZORD Newsletter 2013 #1 - 28 January 2013

NZORD - the New Zealand Organisation for Rare Disorders

In this issue:
1 – Rare Disease Day is one month away. Are your plans in place?

2 – Access to Medicines Coalition is renewing its activity. A chance for more groups to get involved.

3 – Help sought from Ombudsman’s Office over Pharmac’s rejection of funding under exceptional circumstances.

4 – NZORD’s research institute broadens activities and collaborations.
5 – Important decision on carer payments expected in February.


1 – Rare Disease Day is one month away. Are your plans in place?
There are plenty of ideas on the dedicated website for rare disease groups, even the smallest, to raise awareness about their condition and raise funds for their group’s activities. Posters can be downloaded from the site. Detailed guidance is provided on running small events in schools, workplaces, clubs, etc. Promote the Rare Gems™ theme on Thursday 28 February. Options include donating to NZORD’s research institute for those who don’t have a connection to a particular support group for any donations to go to.

New Zealand Rare Disease Day is our part in an international observance of Rare Disease Day, and momentum is building here and across the globe to draw attention to the needs of those whose conditions are often neglected in health and disability support systems.

2 – Access to Medicines Coalition is renewing its activity. A chance for more groups to get involved.
In 2005 the Access to Medicines Coalition was formed by 26 support groups, promoting the need for a medicine strategy to improve decision processes regarding medicine funding, and to ensure New Zealanders achieved improved access to prescription medicines. Despite an improved budget allocation in 2008 and the following two years for medicines managed by Pharmac, those modest improvements to subsidised medicines are now overshadowed by a significant cut of $30 Million from the community Pharmaceuticals Budget which occurred in the May 2012 budget. In addition, those past increases did not solve the problem of heavily restricted access to new medicines in general, and to therapies for very rare diseases in particular.

The working party of the ATM coalition has decided to refresh its activities with an open invitation to all support groups to sign on for involvement. A briefing of all interested groups will take place late in February by phone conference. Signal your interest in participating in the Coalition with an email to

3 – Help sought from Ombudsman’s Office over Pharmac’s rejection of funding under exceptional circumstances.
NZORD has been working closely with the Muscular Dystrophy Association of NZ, and Lysosomal Diseases NZ, to work through difficulties gaining access to specialised medicines for some very rare conditions affecting just a handful of NZ patients. We are very concerned that Pharmac’s new exceptional circumstances policy (NPPA) has tightened criteria and restricted access, despite the intention clearly signalled by government Ministers that such access should be improved under the new policy.

After many years of being frustrated by Pharmac’s narrow approach to this issue, we have sought the help of the Ombudsman’s Office to enquire into the fairness of Pharmac’s process and decisions. A decision by the Ombudsman is expected very soon.

4 – NZORD’s research institute broadens activities and collaborations.
NZORD established the NZ Institute for Rare Disease Research Ltd as a charitable company to help connect patients, families and support groups for rare disorders, with opportunities to contribute to and support research efforts into rare diseases. Our new website for NZIRDR has a directory of NZ rare disease researchers, a list of animal models of disease found in the farm animal population, and information about a rare disease biobank we are developing. In addition, NZIRDR is collaborating with international groups about research policy and priorities, and is actively exploring some specific rare disease research projects with local and international partners.

If your group is interested in pursuing research collaborations with NZ or international researchers, NZIRDR may be a source of ideas and possible connections for you. We welcome enquiries about NZIRDR and how you may become involved to promote research on your rare disease.

5 – Important decision on carer payments expected in February.
It has been a very long time working its way through negotiation, Human Rights review, and through the Courts, and now the Cabinet is considering the detail of policy on payments in family care situations. Decisions should be announced in February to meet the intention that new policy implementation will be in place in May this year.

Of great interest to carers will be whether the announcements include any details about how the government intends to respond to the wider implications of the Tribunal and Court rulings, beyond those “disabled adult children” specifically dealt with in the legal arguments. Read more about the issue in NZORD’s submission made late last year.


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