The PNH Support Association of Australia was formed in 2009 by a small group of PNH patients and their supporters.
Our purpose is to connect Australians affected by Paroxysmal Nocturnal Haemoglobinuria, increase awareness and understanding of the disease and advocate best possible care for patients in order to reduce the confusion and isolation that comes with a PNH diagnosis.
We are staffed by volunteers (mostly patients) and receive no government funding.
In February 2009, a group of PNH patients and their loved ones attended a patient information session held by one of the world’s leading PNH specialists, Dr Peter Hillmen of Leeds University, UK. The session provided an opportunity for people affected by PNH to meet and swap stories. For some, it was the first time they had met anyone else with PNH. The attendees decided to form a support group for people affected by PNH and related diseases. Three volunteers were nominated to incorporate the group.
The PNH Support Association of Australia (PNHSAA) was incorporated in June 2009 as a charitable non-profit organisation, registered with the ATO as a Charity and Deductible Gift Recipient.