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PHARMAC appeal on treatment for ultra-rare blood disease

New Zealanders rallying PHARMAC for life-saving treatment for ultra-rare blood disease

Eight Kiwis battling an ultra-rare blood disease that claims the lives of one-in-three patients within five years of diagnosis, if untreated, will be appealing to PHARMAC this Thursday, January 24, to save their lives.

A life-saving treatment renowned for its powerful reversal of disease progression, is available under funding arrangements in more than 40 countries world-wide.

Yet New Zealand remains an anomaly – the only country in the advanced OECD not funding the treatment for its citizens.

If these Kiwis don’t get access to this treatment, they will die. It’s simply a matter of time.

Their only hope for survival rests in the hands of NZ government medicines-funding agency, PHARMAC.


Download full media kit THURS, JAN 24 @

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