Current section

Contact Us

New Zealand Organisation for Rare Disorders

PO Box 38-538,

Wellington Mail Centre

Phone: +64 4 471 2226

Email:

Charities Commission Registration CC22512

Press Releases and Submissions

Press Releases and Submissions Index: Medicines Strategy signals significant changes / Submission to Ministry of Health on tobacco displays / Minister helps to rescue genetic services report / Submission on the Public Health Bill / 2008 Genethics competition launched / Xenotransplantation clinical trial / Storage and use of Guthrie cards / NZORD’s submission to NZ Food Safety Authority – August 2009 / TVNZ coverage of the folic acid debate

Public Health Bill before Select Committee - NZORD’s submission - March 2008

The Public Health Bill is an important update of old legislation. A key change is greater recognition of non-communicable diseases and provision of public health initiatives to reduce their impact. However the opportunity to give specific recognition to rare diseases and their collective impact as a significant public health problem, has not been acted upon.

Nor is screening adequately addressed. The Bill is the perfect opportunity to build in better structures and responsibility for screening initiatives, but this challenge has not been taken up to any significant degree.

At the select committee hearing NZORD suggested to the Members of Parliament present that they should include formal recognition of the National Screening Unit in this legislation, with a mandate, responsibilities and reporting requirements on screening options for health gains in the population.

Strengthening governance of screening programmes and giving a lead to areas of less formal opportunistic screening in the population, are both justified by advances in technical capability and by community interests in the most rigorous oversight of safety, privacy and technical matters.

A copy of NZORD’s submission to the select committee is available in Word or as a pdf version.

Retrieved: 1 September 2008 12:00am
from URL: http://www.example.com