Charities Commission Registration CC22512

NZORD turns 5. - Press release 14 September 2005

Yes, it’s five years since the September 2000 inaugural conference that gave the mandate to set up NZORD, and set us on the path of making a difference for those disorders and conditions that usually suffer from being “below the radar screen”. It has been a challenging half-decade but there has been lots of progress made too. We are now well placed to ensure the patient/family voice is heard in health and disability consultations, and continue to develop resources for support groups.

Here’s a summary of some of the key achievements in the past five years, extracted from our accountability reports to the Ministry of Health and other funders. But first, the context……

The Paradigm shift
There are two key changes happening for rare diseases:

1. Patients and families are becoming “experts” in their own health care and are using the internet (especially) and support group networks to share information on symptom management, natural progression, emerging therapies, inheritance risks, etc.
2. New genetic and biomedical knowledge, new laboratory tests and training of specialists, are all increasing the capacity to correctly diagnose, treat or manage rare conditions, and to prevent future incidence for inherited conditions.

These changes set the scene for progress on many fronts, and NZORD's focus is on ensuring maximum gain for the most neglected of conditions.

NZORD’s achievements since 2000

• provided a high quality information gateway website www.nzord.org.nz
• delivered a very wide range of information to patients and families, whether on a DIY basis through our website and its user guides to key databases, or by direct assistance to individuals or groups,
• enhanced our website information content and provide free web pages for groups who have no site of their own,
• developed the only comprehensive and freely available directory of national health and disability support groups, with a very high degree of accuracy in the contact details,
• produced highly regarded submissions to the Royal Commission on Genetic Modification, described publicly by one former commissioner as having an "enormous influence" on the Commission,
• ensured all groups are informed of relevant issues and events through our regular email newsletters (once a month on average),
• provided significant advice and support to a number of individuals and support groups on complex issues such as service access problems and funding (or not) of therapy by Pharmac, incorporation options, charitable status, and more,
• gathered responses from groups to contribute positively to many important discussions (on ethics, policy, and legislation, for example) where little or no patient/family or small support group voice has previously been heard,
• maintained and built networks in the sector so that co-ordinated approaches can be taken to policy issues like expanded newborn screening proposals, transition to adult services, impact of genetics for public health policy, etc,
• given presentations and panel comments at various workshops and seminars on research, ethics, etc, to ensure the patient/family and support group perspective is heard and partnerships built with relevant professionals
• introduced the GenEthics competition to NZ Secondary Schools, in partnership with the Royal Society of New Zealand and the Bioethics Council, to improve the level of public discussion on these important issues,
• developed a significant programme for a very successful 2nd NZORD conference held in May 2004,
• started the foundation work for an NZORD-managed blood and tissue bank for rare diseases in New Zealand, to develop a resource of animal and human material to enhance research opportunities,
• ensured we are well connected to international groups via email networks and by helping to develop an Australasian and an International Genetic Alliance,
• Won an “Excellence in Health and Disability Information Management” award from the Ministry of Health and Health Informatics New Zealand, for the quality of our website and associated use of information technology.

We can't claim all the credit for the report of the Royal Commission, the National Health Committee Review of Genetic Services, the guidelines for Pre-implantation Genetic Diagnosis, the establishment of the Specialist Metabolic Service, and progress towards enhanced Newborn Metabolic Screening and folate fortification of food - but we can be satisfied that our voices were clearly heard, and the decisions so far are closely aligned to our submissions.

In July 2005 we reported more specifically to the Ministry of Health and other funders on activities in the previous twelve months:
 
Submissions made:
MoH - Review of human tissue regulation
HRC - Health Research Council research priorities for disability
NZFSA - Folate fortification of food
NECAHR - PGD guidelines
Minister of Health - The need for a rare disease policy framework
BioEthics Council - Xenotransplantation
Pharmac - operational policies and procedures
Pharmac - Industry funding of support groups
National Health Committee - People with chronic conditions

Press releases:
Pre-implantation Genetic Diagnosis
Cord blood banking
Industry funding of support groups
Ante-natal screening for HIV
Need for a rare disease policy
MeNZB vaccination programme

Participation in consultation meetings:
The digital strategy
Electronic referral & discharges
Total mobility review
Outcomes for sickness and Invalids benefits
Environmental support services review
Quality and safety project
MoH/NGO forum
Genetic testing and biobanking (2)

Speaking at conferences or meetings:
Coeliac support group
Fragile X support group
Carers summit
IASSID
Fertility New Zealand
Post-Polio Support society
Health Informatics NZ
Eastern Hutt Rotary
Muscular Dystrophy Association
Panel discussion on GE Babies - eugenics or utopia?

Other activities:
Assisted recruitment of participants for research on ethical decision making
Supervised a law student’s review of access to medicine law and policy
Judging of GenETHICS competition finals
Participation in Neurological Alliance and Carers Alliance meetings
Attending Office for Disability Issues Disability Advisory Council
Attendance at 6 other national and international meetings on health and disability issues, to build patient/professional networks and cooperation

Key Statistics July 2004 - June 2005
150 individual replies to phone, email or postal enquiries about disorders
52,000 individual user sessions on our website
Newsletters published - 13
Media articles published - 2
Papers reviewed - 1
Webpages created for groups - 14 (total now 20)
Support groups added to directory listing - 31
Funds raised from sponsors and charitable sources $99,950

Template website developments:
This is mentioned as a special item as we are just completing the first two sites that offer small support groups high quality but low cost websites, with accessibility features and a simplified content management system. See www.nzordgroups.org.nz

Biobank development:
This is another special project that will increase science capacity and rare disease research in New Zealand, through the collection of animal models of rare diseases, and material donated by families affected by rare disorders. The material will be held in a public good collection and distributed free to researchers. Animal models have been catalogued and some equipment and funding obtained. Collection is expected to start soon.

And finally:
As we reach the five year milestone, the initial group of 30 rare disease support groups has expanded to 125 rare disease groups in our network, and when the support groups for common disorders are added, we now provide a directory of over 190 health and disability support and information groups.

A very productive and satisfying five years, and a good base to build on for the next five.

John Forman
Executive Director