Organisation For Rare Disorders Is Established

New Zealand Organisation For Rare Disorders Is Established

The formal establishment on 1 June of the New Zealand Organisation for Rare Disorders is described by one of its founders and NZORD's new Executive Director, John Forman, as a significant milestone in the promotion of the health interests of rare disease patients and their families.

NZORD had its genesis in an inaugural conference held in Wellington last September, which more than 80 people attended. Affected people and their families were able to discuss their organisational goals and key issues relating to research and clinical care, with specialists in the field of rare and genetic disorders, and agreed to form NZORD to protect and promote their interests.

NZORD sees internet communications, knowledge of the Human Genome, and advanced technologies such as genetic modification, coming together at a remarkable rate that will surely transform the future for those with rare conditions. "Our mission is to strengthen the patient and family support groups, build their links with clinicians and researchers to help capture the gains and opportunities, and promote research that will bring new treatments and cures to affected people as quickly as possible", said Mr Forman.

In the past nine months, the NZORD establishment group has been closely involved in supporting the development of a specialist metabolic clinical service for New Zealand patients, and taking a very active part in the hearing at the Royal Commission on Genetic Modification. These activities are seen by the organisation as two of many essential tasks in promoting research into treatments and cures for rare disorders, and improving the diagnostic, screening and clinical care services received through the health system.

"Rare and genetic diseases are in the top three causes of death of babies aged less than one year. As many as 5% of children are diagnosed in infancy with a genetic condition, and up to 10% by adulthood. However the rarer conditions are harder to diagnose and harder to treat. We have a lot of work to do to improve the health care given, and a specialist metabolic service is central to those improvements", said Mr Forman. "We are delighted that this first objective is well on the way to realisation, even before the ink is dry on our trust deed. We hope that progress will be as swift in our other priority areas".

NZORD's role of representing the collective interests of those affected by rare disorders, will be complemented by efforts to help with the development of effective organisations and information systems for the small groups. "For too long, most of them have been in the 'Too Few, Too Small, Too Hard, Too Bad' basket", said Mr Forman, "and there has been a history of these small groups missing out on funding from a variety of Government and Charitable Trust sources. We see the path ahead made lighter by collective effort and organisation, and we expect to have a significant impact".

"We will be promoting research, advocating for early diagnosis and better care, and supporting patients and families with representation, quality information and stronger organisation around their particular condition".

NZORD will be chaired by Chris Hodson, Q.C., and the Board includes five Trustees with a patient/family interest, Anita Nicholls, Christine Blackler, Gillian Deane, Bronwyn Gray, and Martin Hanley, plus a Medical Advisor, Dr Michael Sullivan, and a Scientific Advisor, Dr Michael Eccles.

NZORD's Executive Director, John Forman, is involved in a number of rare disease organisations in NZ and internationally, and has substantial volunteer involvement in the disability sector, particularly in advocacy for people with an intellectual disability.

He is also a member of The Capital and Coast District Health Board.

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