About PNHSANZ
The PNH Support Association of New Zealand (PNHSANZ) was created in 2012 to raise awareness of the PNH condition and to provide a support network for those affected by it.
In April 2012, a group of PNH patients and supporters attended a presentation by Dr Richard Kelly, an international expert on the treatment and management of PNH. For most patients this was the first time they had met others living with the condition and it was decided that a patient association should be formed. The PNH Support Association of New Zealand (PNHSANZ) was incorporated as a charitable trust in November 2012.
In April 2012, a group of PNH patients and supporters attended a presentation by Dr Richard Kelly, an international expert on the treatment and management of PNH. For most patients this was the first time they had met others living with the condition and it was decided that a patient association should be formed. The PNH Support Association of New Zealand (PNHSANZ) was incorporated as a charitable trust in November 2012.
Our Committee
All members of the PNHSANZ committee are directly affected by PNH - whether it is as a patient or by way of a family member living with the disease. We understand PNH and want nothing more than to ensure patients in New Zealand receive the best possible care.
Chairperson - Daniel Webby
Secretary - Wendy Butcher
Treasurer - Keith Webby
Chairperson - Daniel Webby
Secretary - Wendy Butcher
Treasurer - Keith Webby
Mission Statement
To raise awareness of the PNH condition; advocate for best possible care; and provide a network for those affected by the disease - enabling access to support, community and a sharing of knowledge and experience.
Objectives
- To connect New Zealanders affected by Paroxysmal Nocturnal Haemoglobinuria (PNH)
- To empower PNH patients to manage their condition positively
- To provide information about treatment options, current research, PNH specialists and related topics to the PNH community
- To establish and maintain a web presence through which PNH patients can access practical support and PNH-related information,
- To increase awareness and understanding of PNH
- To advocate for best possible care for patients diagnosed with PNH
- To provide support for patients with related blood disorders, such as Aplastic Anaemia (AA) and Myelodysplastic Syndromes (MDS)
