PNH is an ultra-rare blood disorder. 
We're here to support those affected by it. 

The PNH Support Association of New Zealand was established to support New Zealanders living with Paroxysmal Nocturnal Haemoglobinuria (PNH).

We provide a network for patients to share experiences and knowledge. While we can't promise to make the disease burden any lighter, we hope to empower patients and families to manage the PNH condition as effectively and positively as is possible. 

Please have a look around and don't hesitate to get in touch if you want to know more, or would like to connect with the PNH community in New Zealand. 

THANK YOU!

PNH patients have been dealt a cruel blow with PHARMAC's recent decision to decline funding for eculizumab. And while there is more work to be done, it is appropriate at this time to thank all those that have supported us in our efforts to date. 

So THANK YOU to all those that have supported us through 2013 - particularly to; 
  • the 6200 signatories to our online and paper based petitions
  • all those who have written to members of parliament and met with MP's in person
  • those who have organised sausage sizzles,  garage sales, taken part in fun runs to raise funds and awareness for our struggle
  • the patients and family members who have taken time to speak with PHARMAC directly
  • the patients and family that have publicly shared their stories of life with PNH
  • those that have donated time and energy to help draft our press releases
  • those who have made donations to support our efforts 
  • those that have written to the paper or called in to the radio to draw attention to this struggle 
  • those that attended the PHARMAC decision criteria forums around the country
  • those that have been in touch with us to wish us well

Finally, thank you to all those that made a submission to PHARMAC on their "proposal to decline funding for eculizumab" consultation. 296 (98%) submissions directly opposed PHARMAC's proposal. This is an overwhelming response and to give a sense of scale, 123 submissions were made to the consultation committee on the (then) proposed GCSB Legislation Amendment Bill. 

We are now working with the NZ Organisation for Rare Disorders (NZORD) to continue our fight for improved access to Orphan treatments in New Zealand. PNH patients are not alone in this project of social justice - namely equitable recognition of patients' right to health and right to life. 

Again, thank you for supporting us and in so doing, providing us with the resolve to carry on. 
12 December 2013
It with sadness that we inform patients, supporters and family that eculizumab has been declined for funding in NZ. 

Please visit this section to learn more.