NZORD Newsletter 2004 #4 - 4 May 2004

Hello everyone,

In this issue:
1 - Last call for NZORD conference registrations.
2 - Review of Health & Disability Consumers' Code of Rights.
3 - New evidence-based website on Complementary and Alternative Medicine.
4 - Human Tissue collection and use - Ministry of Health review.
5 - Other MoH items of interest.
6 - Reminders: Influenza vaccinations and genETHICS competition.
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1 - Last call for NZORD conference registrations.
Please send in your registration forms for the NZORD conference by Friday 14 May. We are looking forward to a dynamic event with a good balance of professional and family speakers at Te Papa on Friday 28 & Saturday 29 May. The partnerships developed between support groups and clinicians and scientists researching their disorders, are heralding a new wave of progress towards understanding and treating rare diseases. Come along and hear what others are doing, and join in the discussion groups on the challenges of biotechnology, genetics and ethics. Click here for the programme outline. Click here to register.

2 - Review of Health & Disability Consumers' Code of Rights.
As signalled in our last newsletter, NZORD has made a submission to the Health and Disability Commissioner, as part of the current review of the Act and Consumers' Code of Rights. We focussed on two main issues - the adequacy of advocacy services when consumers may lack capacity and are in long term care or supported living situations - and the vexed question of a right to health and disability services. Click here for the full text of our submission.

3 - New evidence-based website on Complementary and Alternative Medicine.
The popularity of complementary and alternative medicine has been marred by some major concerns in recent years over safety issues and manufacturing standards. To help the average citizen get a better appreciation of these products or services, the Ministry of Health and Health Technology Assessments last month launched a new website www.cam.org.nz

Though the site has limited information at this stage, it promises to be a good source of reliable evidence-based information. Other sites with very good information on alternative medicine are:
MedlinePlus published by the US National Library of Medicine and the National Institutes of Health. Click here for MedlinePlus.
Complementary Medicines published by the Australian Therapeutic Goods Administration. Click here to view the TGA site.

4 - Human Tissue collection and use - Ministry of Health review.
The Ministry of Health is reviewing the regulation of human tissue and tissue-based therapies with a view to a new and comprehensive regulatory regime being developed in this area. This review will include collection of organs or body parts for diagnosis, teaching and research, as well as the use of tissues for therapy (e.g.by transplant, gene therapy or other means). If your group has any particular interests in these topics you should obtain a copy of the discussion document and consider making a submission. Click here to find out more about taking part in the consultation process.

Or you can pass on your comments to NZORD to be included in our submission. Click here for the outline of our submission. Your comments on this are welcome prior to the Ministry's closing date of 4 June 2004.

5 - Other MoH items of interest.
Updates from the Ministry on SARS, Meningococcal B vaccine, and Painted Apple Moth spraying, plus plans for a National Immunisation register, can all be accessed from the News and Issues page of the Ministry's website. Click here to read more.

6 - Reminders.

Free Influenza Vaccination Campaign.
Free influenza vaccinations are available from most General Practices for those aged 65 and over and those adults and children with certain chronic medical conditions. NZORD encourages support groups with at-risk membership, to promote the uptake of this free service, and prevent avoidable deaths. Click here to read more on the Ministry of Health website.........

The genETHICS competition is open to secondary school students, examining the ethics of wider genetic testing. Read more....

Regards, John

John Forman
Executive Director