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NZORD Newsletter 2003 #8 - 15 August 2003

NZORD Newsletter 2003 #8 - 15 August 2003

NZORD - the New Zealand Organisation for Rare Disorders Hello everyone, Behind the headlines on the variant CJD scare - some thoughts on the other tragedies involved. Quoted below are some brief excerpts from today's press release/commentary on the state of rare disease research in New Zealand. We're pleased to note a slightly edited version of this has featured in the Herald's Dialogue column today.

"A very unfortunate young man lies gravely ill in Waikato Hospital with a serious neuro-degenerative condition. The country nervously waits on tests for variant CJD. Damage control is activated to avert any link to New Zealand's beef produce. If you thought the initial public comment was mostly about markets and the dollar, you would not be too far from the truth......"

"Many of these rare diseases are not well understood, and often difficult to diagnose. Treatments are much rarer. Cures can be written on the head of a pin. But some are well understood. Some could be prevented right now through enhanced screening and faster diagnosis. Some could be treated effectively with innovative but expensive medicines. With greater commitment to research, the burgeoning knowledge of the genetic cause of many diseases could lead to treatment for many more in the near future....."

"The predominant ethic in health policy should be the obligation to actually do what has become possible to do. It is time this 10% of the population had their day in the sun. The continuing tragedy for the community is that the chance to get better control of rare disorders is left unanswered, when increasing numbers of them can be managed." Read <> more.........

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