Story: Health advocacy and self-help

Page 3. Genetic disorder organisations

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Haemophilia Foundation of New Zealand

The New Zealand Haemophilia Society was founded in 1958. At first it was run by volunteers and assisted by a medical advisory board. As the society developed, it adopted a more formal structure with several paid staff and a volunteer governance board. It has received funding from several sources, including district health boards, pharmaceutical companies and other corporate sponsorship, and public donations.

Blood ties

Haemophilia is a bleeding disorder – blood cannot clot properly, which means that bleeding takes a long time to stop or can only be stopped through intervention. Haemophilia is much more common in men because it is a sex-linked disorder, and is typically passed down by women to their male children. The most famous sufferers are the descendants of Queen Victoria – one of her sons had the disorder and her daughters passed it to many of the royal families of Europe through intermarriage.

The society, which later changed its name to the Haemophilia Foundation of New Zealand (HFNZ), provides support and advocacy services including outreach workers, camps for those with haemophilia and their families, and financial assistance to meet tutoring costs for children who miss school due to the illness.

HFNZ has been involved in some high-profile issues. When many people with haemophilia were infected with HIV after receiving contaminated blood in the 1980s, HFNZ campaigned for the provision of New Zealand-derived, safe, heat-treated blood products. It engaged in legal action to ensure infected people received payments from the Accident Compensation Corporation (ACC).

Similar action was taken when sufferers were infected with Hepatitis C. In 2006 the government announced a compensation package for people infected with this disease through contaminated blood products.

Multiple Sclerosis Society of New Zealand

The Multiple Sclerosis Society of New Zealand was founded in 1967 and in 2018 there were 18 autonomous regional branches throughout the country. Fieldworkers supported those with multiple sclerosis by organising exercise classes and social gatherings. The society also offered educational scholarships and awards for MS sufferers and carers. It funded research programmes and liaised with central government about relevant health issues.

Huntington’s Associations of New Zealand

Three Huntington’s Associations were founded in Auckland, Wellington and Christchurch in 1980 to support people with Huntington’s disease. Later associations were formed in other parts of the country. In the 21st century all the groups were autonomous, but they pooled resources to organise national events. Some were formal organisations with paid employees; others were more informal and relied on volunteers. Some funded fieldworkers who ran support programmes for sufferers and others lobbied the government to provide care homes for people who became too ill to live in their own homes.

New Zealand Organisation for Rare Disorders

The New Zealand Organisation for Rare Disorders (NZORD) was founded in 2000 to help people suffering from rare genetic disorders and their families to find essential information about their conditions. NZORD also ran support groups, provided information on care options in the public health system and monitored relevant government policies. It brings together clinicians and those living with rare disorders to share information and experiences and lobbies for funding for treatment.

How to cite this page:

Rosemary Du Plessis and Anne Scott, 'Health advocacy and self-help - Genetic disorder organisations', Te Ara - the Encyclopedia of New Zealand, (accessed 20 April 2024)

Story by Rosemary Du Plessis and Anne Scott, published 5 May 2011, reviewed & revised 17 Jul 2018