Generations Long 2

HFNZ organisation and role

The story of HFNZ and its people is an example of individuals coming together and turning what could be viewed as a tragedy into a success.

The Haemophilia Foundation of New Zealand Inc. (HFNZ) is a registered charity that aims to:

  • provide support for people with haemophilia, von Willebrands Disorder and related bleeding disorders and their families/whanau
  • maintain a high standard of treatment of haemophilia and related bleeding disorders throughout New Zealand
  • be a representative of the haemophilia population at a government level and to health services providers
  • be a responsible member of the global haemophilia community 

From the days when pain, suffering and disability were the fate of people with haemophilia, through the 1970s when some treatment became available allowing freedom and hope, through the shock and devastation associated with viral contamination of the blood supply, particularly HIV and hepatitis C, to the cautious optimism of today where state-of-the-art medication allows people with haemophilia to live full lives.

Advances in medicine over the last 50 years have meant that most people with haemophilia and other inherited bleeding disorder do now live ‘normal’ lives. Luckily, the visible impact of haemophilia is diminishing. Although not easily seen on the surface, living with haemophilia today still impacts families with newly diagnosed babies, growing children, and adults with the condition, in a variety of distressing and sometimes overwhelming ways.

HFNZ’s mission statement is to provide excellence in care, education, advocacy and support to all people in New Zealand with bleeding disorders and their family/whanau.

Through our Outreach Workers, innovative educational initiatives and camps, physical activity and support footwear programmes, and educational grants, HFNZ is able to assist people with these chronic disorders through all stages of their life. We provide the tools to give our members a voice, and try to ensure they receive the best care that medicine can offer – as, despite advances in genetic technology, a cure remains elusive.

Today, HFNZ comprises four regions throughout the country (Northern, Midland, Central, Southern) known as Member Representative Groups (MRGs), with an Outreach Worker assigned to each. There are also two national MRGs - Piritoto and the National Youth Committee.  The National Office and administration of the Foundation is located in Christchurch. The National Council is responsible for the governance of the Foundation, on which sits the National President, two Vice-Presidents, a Treasurer, and a representative from each of the MRG's own committees. All Council positions are voluntary and decided by election at the Annual General Meeting.

HFNZ are very proud of advances and success they have achieved over the last half century. To continue to reach toward their goals, they rely largely on public donation. With the incredible generosity of the New Zealand public and the amazing support received from their Sustaining Patrons, Corporate Friends, and grant applications, HFNZ look forward to many more success stories in coming years.

Role of HFNZ

Promote the personal interest, treatment, rehabilitation, lifetime care, and advancement in life, of all people with haemophilia and related genetic bleeding diseases

  • Offer information and guidance, which promotes effective measures of care

  • Promote full participation and equal opportunity for all in community activities, education, recreation, and employment

  • Provide or seek individual assistance welfare, participation, opportunity, and advocacy

  • Provide representation, at a regional and national level, to ensure that adequate and safe supplies of treatment products, and other treatments or cares are available

  • Advocate for adequate services to meet the needs of people with haemophilia

  • Provide up-to-date information

  • Act as a consultative body to Government

  • To educate families, health professionals and other key stakeholders.

Read more about HFNZ, its history and the sometimes tragic tale of haemophilia in New Zealand in Still Standing:Haemophilia Foundation of New Zealand 1958-2008. Hard copies are available from HFNZ.

Watch video of 50 years of HFNZ in pictures

HFNZ is a National Member Organisation of the World Federation of Haemophilia.

Got some questions about Haemophilia?
Check out our FAQs page