Our story

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.  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.

Our Committee

We are staffed by enthusiastic and passionate volunteers (mostly patients), and are supported by subscriptions and grants. Having patients on the committee ensures that all patients’ concerns are expressed and integrated into our everyday operation and initiatives.

We are fortunate to have an excellent mix of staff with various expertise and experience, contributing to a diverse and integral team. All committee members are based in Melbourne. Our team consists of:

President – Matt Dean

Public Officer & Treasurer – Michael Patterson

Secretary – Jenny Sturrock

Committee Members – Grace Dean and Chhean Khoun

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.

For more Information on PNHSAA
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