welcome to the pnh support association of australia
Welcome to the PNH Support Association of Australia, the only organisation dedicated to Australians with Paroxysmal Nocturnal Haemoglobinuria (PNH).
Our aim is to support PNH patients and their loved ones to manage their condition positively by providing access to accurate information, practical resources and a support network. We also provide opportunities to meet with other patients and caregivers to reduce the isolation often experienced by people with rare diseases.
Although our primary focus is PNH, we recognise the links between PNH, Aplastic Anaemia (AA) and Myelodysplastic Syndromes (MDS) and our support encompasses patients which have been diagnosed with one or more of these illnesses and their friends, families and carers.
Further information about PNH, AA and MDS will be added to this site over time. Please contact us with any specific enquiries.
pnh patients finally given gift of life
9 December 2010 - The Government announced today that Soliris (Eculizumab) the only effective treatment for Paroxysmal Nocturnal Haemoglobinuria (PNH) will be funded through the Life Saving Drugs Program from 1 January 2011.
PLEASE NOTE: The LSDP is a separate program to the Pharmaceutical Benefits Scheme. Soliris is a hospital-only medication and no patient co-payment applies. Eligible patients receive Soliris free of charge in hospital.
Read more here.
thank you!
A very special thank you to everyone - PNH patients, families, friends, colleagues, associates and those who didn't know anyone suffering with PNH but helped anyway. Thank you for your support via our petition, with calls, emails, letters, opening up your lives to the media and on this website and generally making a lot of noise.
Thanks to all of you, our message was heard loud and clear and now this life-saving treatment is available sooner.
THANK YOU FOR HELPING TO SAVE OUR LIVES!
Contact Us:
PNH Support Association of Australia
PO Box 472
SOUTH YARRA VIC 3141
Ph: 0432 321 207
