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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.
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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
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 www.nzord.org.nz
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
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.
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
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
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
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
The genETHICS competition is
open to secondary school students, examining the ethics of
wider genetic testing.
Regards,
John John Forman Executive Director, NZORD ENDS
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