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Demand Funding for Life-Saving Treatment of PNH
Published by PNHSAA on May 25, 2010
Closed on Jan 09, 2011
Closed on Jan 09, 2011
7276 Signatures 
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Target: To the Honourable Speaker and Members of the House of Representatives
Region: Australia
Web site: http://www.pnhsaa.org.au
Result:
Thank you to everyone for your kind support, in total we gained 24,000 signatures to this petition which resulted in the Australian Government funding Soliris for eligible PNH patients from 1 January 2011. This petition greatly assisted that decision being made before Christmas 2010 and securing a brighter future for PNHers and their families. Thank you!
Background (Preamble):
AUSTRALIAN CITIZENS ONLY PLEASE
Paroxysmal Nocturnal Haemoglobinuria is a very rare, devastating and often fatal disease, affecting 70 Australians. There is only 1 effective treatment in the world, Soliris® (Eculizumab), which is available in over 30 countries but NOT Australia.
We are urging the Federal Government to take urgent action to allow Australian PNH patients access to Soliris.
Paroxysmal Nocturnal Haemoglobinuria is a very rare, devastating and often fatal disease, affecting 70 Australians. There is only 1 effective treatment in the world, Soliris® (Eculizumab), which is available in over 30 countries but NOT Australia.
We are urging the Federal Government to take urgent action to allow Australian PNH patients access to Soliris.
Petition:
This petition of Australian Citizens, who are friends, family or supporters of Australian sufferers of Paroxysmal Nocturnal Haemoglobinuria (PNH) disease, a rare and potentially fatal disease of the blood draws to the attention of the House the need to publicly fund out of the Federal Government, the only currently available treatment for PNH sufferers, namely Soliris® (Eculizumab) as a matter of urgency.
We therefore ask the House to introduce and pass any legislation or to take any administrative action available to the House that will enable sufferers of PNH disease to urgently receive breakthrough life saving treatment for this very rare and debilitating disease.
We therefore ask the House to introduce and pass any legislation or to take any administrative action available to the House that will enable sufferers of PNH disease to urgently receive breakthrough life saving treatment for this very rare and debilitating disease.
The Demand Funding for Life-Saving Treatment of PNH petition to To the Honourable Speaker and Members of the House of Representatives was written by PNHSAA and is in the category Health at GoPetition. Contact author here. Petition tags: pnh, paroxysmal nocturnal haemaglobinuria, soliris, eculizumab, pnhsaa, rare disease, pnh disease
