Our Aims

Mission Statement

To support Australians diagnosed with Paroxysmal Nocturnal Haemoglobinuria (PNH) and their families and friends, to increase awareness and understanding of PNH and advocate best possible care for PNH patients.

Objectives

• To facilitate communication between Members and provide a strong support base to empower PNH patients to manage their condition positively.
• To provide information about treatment options, current research, PNH specialists and related topics to Members and the Australian community.
• To establish and maintain a portal through which to direct Members to other available means of practical support and PNH-related information, including participating in related domestic and international support group networks.
• To provide advocacy services to Members to raise public awareness of PNH and ensure patients have access to the best possible treatment and care.
• To undertake, facilitate and fund research in PNH and associated diseases.
• To increase awareness of PNH and associated diseases within the medical profession and the wider community
• To endeavour to support patients with related bone marrow failure diseases, such as Aplastic Anaemia (AA) and Myelodysplastic Syndromes (MDS) in a manner similar to the support offered in relation to PNH.