- Pompe disease sufferer calls for funding
- Samantha
July 30, 2015 - More cash needed for rare diseases
- Samantha
April 15, 2014 - Pharmac’s plan to open a $5 million fund for rare disorder medicines
April 15, 2014 - Life-saving drug needed
January 1, 2014 - The Panel on Jim Mora’s Afternoon radio program on Radio NZ
- Laurie
October 21, 2011
This is a particularly annoying response from a bioethics professor who clearly is not up with the play on the treatment of Pompe. It would appear in fact that he was well briefed by Pharmac. The relevant part starts at 16.50 from the start. - Behind a penguin on priority list
- Laurie
October 21, 2011
If we can go so far out of our way to save one sea bird, then surely our people deserve better than this. - Patients ask Government to Fund ERT
- Freda
October 19, 2011
Radio interview with Freda, Monique Griffin and John Forman - “The Panel” on Radio NZ
- Laurie
October 19, 2011
Laurie’s interview starts about 11 minutes into the recording. - Rare disease delegation left out in cold
- Dean
October 19, 2011
An Invercargill equipment repairman with a rare neuromuscular disease was one of five people turned away from the Beehive yesterday, after seeking an intervention from John Key to get access to the drug Myozyme, which could halt the progression of the fatal disease. - Dying man turned away at Parliament
- Laurie
October 19, 2011
A New Plymouth man fighting for his life headed to Wellington to appeal to John Key for help, only to be turned away by the prime minister's security guards. - Government breaks promise to rare disease sufferers
October 18, 2011
The Government’s refusal to explain why it has not delivered on a promise to ensure access to life-saving drugs for Kiwis suffering from rare diseases is cowardly and disrespectful Labour’s Health spokesperson Grant Robertson says. - Campaign for an orphan diseases policy goes to the Beehive
October 18, 2011
Rare disease groups take campaign for an orphan diseases policy to the Beehive - Unsuccessful bid to lobby over rare drug
October 18, 2011
Patients with a rare degenerative disease tried unsuccessfully to plead for special funding from the Prime Minister on Tuesday. - Battle to get drug funded
- Freda
September 16, 2011
Freda Evans battles every day with basic tasks like eating, breathing and walking, but is finding Pharmac the toughest opponent in her search for "a better quality of life". - Sad Farewell
- Allyson
September 13, 2011Wairarapa Midweek Newspaper
- Pharmac drug ruling ‘a death sentence’
- Laurie
June 18, 2011Laurie Hill can't afford to live. The 49-year-old New Plymouth man has a rare medical condition and without an expensive treatment – which Pharmac says will cost almost $1 million a year and may not even work – he believes he is being sentenced to an early death.
- Pharmac: The Politics of Playing God
June 13, 2011 - Radio New Zealand: National: Checkpoint
June 7, 2011People with rare, genetically inherited disorders are demanding a better deal from the drug-buying agency Pharmac.
- Dominion Post
- Dean
June 7, 2011Drugs For Rare Diseases May Not Be Funded
- Radio New Zealand: National: NINE TO NOON
- Allyson
June 7, 2011 - Allyson’s second submission to PHARMAC
March 24, 2011 - Review may widen drug treatment options
- Laurie
January 13, 2011 - Girl’s hospital care costs nearly $1 million
January 10, 2011