NZORD Conference 2004 - Final Programme

Day 1     Friday 28 May

8:00am Registration opens - Welcome tea & coffee
 
9:00am Formal Welcome
Ray Ahipene-Mercer, Tangata Whenua & Wellington City Councillor
 
9:05am Opening Address
Hon. Marian Hobbs, Minister for the Environment & Wellington Central MP
 
9:25am Response to Minister's address
Christopher Hodson QC, Chairman of NZORD
 
9:30am Session One: Basic Science and Translation to Therapy
Chair: Dr Michael Sullivan, Paediatric Oncologist & Cancer Genetics Researcher, Christchurch School of Medicine, and NZORD Trustee

Speakers:
Dr Steven Walkley - Department of Neuroscience, Albert Einstein College of Medicine, New York
Dr Matthias Klugmann - Department of Molecular Medicine and  Pathology, University of Auckland
Dr Michael Sullivan, Christchurch School of Medicine
 
10:45am  Morning Break
 
11:15am Session Two: A New Paradigm: Expert Patients and Expert Families
Chair: John Forman, Executive Director, NZORD

Speakers:
Sharon Terry - President of the Genetic Alliance, Washington DC, and PXE Parent
Bronwyn Gray - Parent, Director of the New Zealand LAM Trust and NZORD Trustee
Martin Hanley - NZORD Trustee and Epidermolysis Bullosa Parent
Jenny Noble - Mucolipidosis Parent and LDNZ Secretary
John Forman - Executive Director, NZORD, and Mannosidosis Parent
 
1:00pm Lunch
 
2:00pm Session Three:  Blood & Tissue Banking - Research & Collaboration Opportunities
Chair: Dr Mike Eccles, Department of Pathology, Otago University, and NZORD Trustee

Speakers:
Hugh Blair - Professor of Veterinary Medicine, Massey University
Stephen Robertson - Professor of Paediatric Genetics, Otago University
Sharon Terry - President of the Genetic Alliance, Washington DC
Dr Mike Eccles, Department of Pathology, Otago University
Andrew Moore - Chair, National Ethics Advisory committee
 
3:30pm Afternoon Break
 
4:00pm Session Four: Partnerships for Progress - panel discussion & questions
Policies, Politics and Possibilities for Rare Disorders
Chair: Linda Clark, Radio Journalist and NZORD Trustee

Panel: The panel consists of the speakers from today's session, plus Patricia Anderson, Policy Manager, Health Research Council
 
5:30 End of Day One - Friday evening at leisure
 
Day 2    Saturday 29 May

8:30am Registration
 
9:00am Session One: Biotechnology, Genetics and their Impact
Chair: Jill White, Deputy Chair, Toi te Taiao, the Bioethics Council

Speakers:
Dr Steve Walkley - Department of Neuroscience, Albert Einstein College of Medicine, New York
Stephen Robertson - Professor of Paediatric Genetics, Otago University
Dr Jean Fleming - Department of Anatomy and Structural Biology, Otago University, and former member, Royal Commission on Genetic Modification
Dr Dianne Webster - Biochemical Geneticist and Director, National Newborn Screening Programme
 
10:30am Morning Break
 
11:00am Session Two: Biotechnology, Genetics and their Impact - continued..

Speakers:
Alice Christian - Senior Genetic Associate, Central Regional Genetic Services
John Forman - Mannosidosis Parent & NZORD Executive Director
Lynne Horne - Leukodystrophy Parent & support group leader
Kim Caffell - Fragile X Parent and Nurse
 
12:30pm Lunch
 
1:30pm Session Three: Pre-implantation Genetic Diagnosis for prevention of disease
A special focus session on the newest preventative technology
Chair: John Forman, NZORD Executive Director

Speakers:
Richard Fisher - Fertility Associates
Sylvia Rumball - Chair, National Ethics Committee on Assisted Human Reproduction
Nicky Churton - Parent and member of the Cystic Fibrosis Association
John Forman - NZORD Executive Director, speaking on other families' perspectives
 
3:00pm Afternoon Break
 
3:30pm Session Four: Social & Ethical Issues - Group Discussion
 
4:45pm Social & Ethical Issues - Reporting Back
 
5:15pm Concluding remarks and close of conference
 
5:30pm Board our arranged transport for Government House
 
6:00pm Government House Function
hosted by Her Excellency the Governor-General, the Hon. Dame Silvia Cartwright
 
7:30pm Function concludes - Transport provided back to Te Papa