We are in the process of setting up an e-petition to lodge with the Australian Government, urging it to fast track the consideration of funding of the ONLY available treatment to PNH patients – Eculizumab (trade name Soliris®).
Six Australians are gravely ill, currently suffering from the debilitating disease Paroxysmal Nocturnal Haemoglobinuria, many more are suffering daily from its effects
Because PNH is a very rare disease the cost of the treatment is high, however we believe this should not prejudice the Government against funding this drug, which could save the lives of up to 70 Australians. Should they be discriminated against simply because they suffer a rare disease, rather than a high profile killer?
Please contact us via the form on our home page and we will contact you once the e-petition is established.
Thank you for your support!