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NZORD Newsletter 2004 #5 - 3 June 2004

Thu, 3 Jun 2004

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone,

In this issue:

1 - NZORD Conference 2004 a resounding success.

2 - NZORD website receives significant award.

3 - Review of Human Tissue collection and use. Submissions close Friday 4 June.

4 - Pharmac Consumer Advisory Committee vacancy.

5 - Review of Health & Disability research ethical controls.

6 - Embryo donation guidelines. Submissions close 25 June.

7 - Reminders: Influenza vaccinations and genETHICS competition.

************************************************************************** ** **

1 - NZORD Conference 2004 a resounding success.

NZORD's Conference 2004 with the theme "Partnerships for Progress" concluded on 29 May with a reception at Government House hosted by our Patron, Her Excellency, the Hon Dame Silvia Cartwright, Governor General.

Conference presentations from researchers, health professionals and family members, addressed a number of key issues relating to rare disorders. The priority list endorsed by conference participants included: the need to build the profile of NZORD as the voice for rare disorders to promote our collective needs; support for more research (including our own Biobanks to promote research opportunities); and continued collaboration with researchers, clinicians and policy makers. Strong support was given for pre-implantation diagnosis as a control of serious diseases. Click here to read more about our conference.

2 - NZORD website receives significant award.

Excellence in Health & Disability Information Management is the title of an award just announced for NZORD. The award is presented each year by the Ministry of Health and Health Informatics New Zealand, and this year NZORD shares the award with four other finalists. Details will be written up for the Health Care Review Journal and a presentation made at the Health Informatics Conference in July. Our website is our organisation's flagship. We are very proud of this achievement and wish to acknowledge the vital support received from web design team Their design, site architecture and advice helped us achieve a significant resource for all interested in rare diseases.

3 - Review of Human Tissue collection and use. Submissions close Friday 4 June.

A reminder that the review of human tissue and tissue-based therapies closes Friday. There is still time to get your last-minute comments to NZORD for inclusion in our submission - click here to see the principles we plan to convey to the Ministry - or make your own comments direct to the Ministry.

This review includes 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). It contains important issues for patients, families, clinicians and researchers, and seeks to strike the right balance between personal protections and public interest. Click here to find out more about the review process.

4 - Pharmac Consumer Advisory Committee vacancy.

Pharmac, the government's drug management agency, has a vacancy on its consumer advisory committee and is seeking an applicant with particular knowledge of Maori health and community dynamics. Click here to read the position specification. Nominations close 23 June.

5 - Review of Health & Disability research ethical controls.

Another welcome review is the National Ethics Advisory Committee's review of processes of ethical controls on Health and Disability research. This review has been accepted by the Minister of Health and will lead to important actions to reduce blockages in the system, while ensuring protections of research participants. Click here to read a copy of the NEAC's report.

6 - Embryo donation guidelines. Submissions close 25 June.

The National Ethics Committee on Assisted Human Reproduction has produced guidelines to cover the donation of surplus embryos from IVF procedures, to infertile couples. These guidelines are open for comment and any submission should be made by 25 June. Click here to read the NECAHR consultation document. NZORD notes that the NECAHR guidelines provide a thorough and balanced approach to the ethical and social issues raised by embryo donation, and therefore does not intend to make a submission. We encourage submissions from groups that have particular interest in these issues.

7 - Reminders: Influenza vaccinations and genETHICS competition.

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 free vaccinations are available to the end of June.

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

Regards, John

John Forman

Executive Director, NZORD


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