New Zealand Organisation for Rare Disorders
It all started with the arrival of the internet and the realisation that my wife and I could find out about the mysterious diagnosis our twins had: Alpha-mannosidosis. It led us to the development of a support group for the Lysosomal group of diseases (www.ldnz.org.nz),' says John Forman, Executive Director, NZORD. In the course of setting up this support group, it quickly became apparent that there were many rare disease groups needing resources, support and organisation, to ensure their voices could be heard and their interests considered, rather than being lost in the rush. This is how we got the idea, early in 2000, to create NZORD, a charitable trust dedicated to providing information on rare disorders to patients and their families, promoting research, and building partnerships between patients, clinicians, researchers, government and industry.'
NZORD has always recognised that information and education of patients are essential components of the empowerment of the rare disease community. To this end, it organised two successful NZ conferences on rare diseases in 2000 and 2004; the next one is planned for November 2007. These conferences are one of the avenues NZORD uses to find out about the issues at the heart of patients, with a view to defining the agenda for the improvement of services of healthcare delivery. Helping support groups get established is another way of providing information to the community. NZORD provides advice for the setting up of such groups as well as website facilities for rare disease groups to communicate with their members and to link with overseas groups representing the same condition. Today, the network is 130 groups strong.
NZORD acts as the voice of the NZ rare disease community, and its advocacy activities are constantly growing. It makes detailed submissions on all major public consultations. Some of the topics it has worked on are: government funding of pre-implantation genetic diagnosis; newborn hearing screening; folate fortification of food (to reduce the incidence of neural tube defects in newborns); and newborn metabolic screening. The trust also plays a leadership role in the Access to Medicines Coalition, a group comprised of 25 non-governmental, not-for-profit health organisations aiming at improving access to prescription medicines in NZ. ‘Approval and subsidy processes for medicines in NZ are slow and inefficient, which is a problem for all patients, and especially so for rare disease patients, who do not benefit from an Orphan Drug Regulation such as the European or US ones,' says John Forman. ‘In fact, NZ lacks an over-arching medicine strategy, and we are working with our government to establish one to guide Pharmac2 and District Health Boards in their decisions.' NZORD is present in many official networks in the health and disability sectors in NZ and tries to influence decisions made at every level. Some of its current priorities include: expanded application of newborn screening programmes; improvement of rare disease diagnoses; better continuity of care in transition from paediatrics to adult health care services; and improved practitioner training in genetics and genetic counselling. Promotion of research on rare diseases is another priority of NZORD. The trust is advocating for increased funding of research and specific commitments to targeted research into rare diseases with NZ connections. It also advocates for partnerships between researchers, patients, industry and government. An example of such partnership is the extension of community access to the TelePaediatric Service (a national videoconferencing network initially extending to all 21 paediatric specialist services in the country, aiming at improving the access of children to high quality specialist services).
NZORD currently benefits from a 3 year contract with the NZ Ministry of Health for providing information and help to patient support groups. The funding is up for renewal in 2007. ‘We're also strong on international networks and actions as we think we can all gain from the momentum generated by good international networks,' says John Forman. In December 2006, it became an associate member of Eurordis, a collaboration that both organisations are hoping to develop further into the future.
1In Europe, a rare disease - or rare disorder - is defined as affecting less than 1 in 2,000 citizens
2New Zealand's drug governing body
This article was previously published in the February 2007 issue of our newsletter.
Author: Jerome Parisse-Brassens
Photo credits: New Zealand @ citylink.com ; other photos @ NZORD