Organisation for Rare Disorders Newsletter

NZORD - the New Zealand Organisation for Rare Disorders

In this issue:

1 - Good news budget announcements for health and health research.
2 - The 2005 genETHICS competition is under way.
3 - Child Health Research Foundation grants for 2005.
4 - Meningococcal B vaccine reaches 700,000 doses, and extended to South Island soon.

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1 - Good news budget announcements for health and health research.

They just seem to keep on coming. A steady stream of announcements about significantly increased cataract operations, $40 million for the cancer control strategy, a major boost to health research funding, doubling of major joint surgery over 4 years, $10 million for drug, alcohol and depression programmes, and $137 million to improve drinking water quality. That is just the pre-budget announcements, but they indicate a positive trend and we should expect more in the budget itself this coming week.

A key question for NZORD is whether there will be anything for the less common conditions, or will the politically sensitive issues that have high numbers, collectively high costs and high profile, be the only ones addressed. We will follow the budget with interest, and keep you posted.

2 - The 2005 genETHICS competition is under way.

Following the great success of last year's inaugural competition for New Zealand students, NZORD is pleased to join with the Royal Society of New Zealand, the NZ Society of Science Educators, and Toi te Taiao: the Bioethics Council, in bringing the 2005 genETHICS competition to New Zealand secondary schools. This year students will discuss the ethics of disclosing health information about a person, when there is concern at possible risk for others. Students will need to study the genetics of the particular disease in the scenario, to discuss the reality of that risk and the ethical implications.

Certificates for all participants, plus book vouchers and cash prizes totalling $1,000 are at stake for the top entries, and finalists will present to a judging panel before an audience of students and scientists at the Royal Society. Click here for entry details on the website of the Royal Society of New Zealand.

3 - Child Health Research Foundation grants for 2005.

Research grants of up to $100,000 are on offer by the Child Health Research Foundation for projects in the areas of Child Health and Cot Death (SIDS). Applications close on 29 July 2005. More details are available on the CureKids website

4 - Meningococcal B vaccine reaches 700,000 doses, and extends to South Island soon.

The campaign to immunise New Zealand children and young people against this dangerous disease, is going from strength to strength. Very high levels of uptake, in excess of 95%, are reported in the Auckland areas where the campaign started. A very good safety profile for the vaccine has led to the administration of the vaccine being extend to babies at six weeks old. The vaccine is now available in all of the North Island, and children and young people in the South Island will have access to the vaccine from the end of this month. The biggest mass vaccination in New Zealand's history is on track for a very successful implementation, and we owe a debt of gratitude to the many officials and health professionals who had the vision and energy to put this in place. Keep up to date with progress at the Ministry's Meningococcal B website.

Regards, John

John Forman

Executive Director, NZORD

New Zealand Organisation for Rare Disorders

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