About

Auckland Huntington’s Association (HDA) was founded in 1989 by families for families whose lives are impacted by Huntington’s disease (HD). What began as a network of support groups has grown to provide a range of personalised specialist services for individuals and families across Auckland and Northland.

Meet the people involved in the Huntington’s Disease Association Auckand. 

As the only charity in the Auckland and Northland dedicated exclusively to supporting the Huntington’s disease community, Auckland Huntington’s Association delivers its lifeline support through a network of HD Specialists, Nurse Practitioners Youth Advisors and support workers . These services make the difference between families coping and not coping.

Our Mātanga Tapuhi Nurse Practitioner work autonomously and in collaborative teams with other health professionals to promote health, prevent disease, and improve access and population health outcomes in our Huntington community, in Auckland and Northland.

Our Mātanga tapuhi nurse practitioners combine advanced nursing knowledge and skills with diagnostic reasoning and therapeutic knowledge to provide patient-centred healthcare services including the diagnosis and management of health consumers with common and complex health conditions. She also delivers training and advice for staff working in health and social care settings, Advanced care plans.

She is able to provide a wide range of assessment and treatment interventions, ordering and interpreting diagnostic and laboratory tests, prescribing medicines and admitting and discharging from hospital and other healthcare services/settings. As our clinical leaders she works across healthcare settings and influence health service delivery and the wider profession for our Huntingtons community.

You, a family member, or anyone who knows you can contact our HD Specialist services directly. You can also be referred by your GP, social worker, genetics service or any professional involved in your care. HD Specialists will support you with information about Huntington’s disease and advice on symptom management. They will visit your home or meet you in a mutual place to carry out specialist assessments. Any assistance that you require, e.g. a swallow assessment, will be followed up and the necessary steps taken.

Our youth Advisor and Support workers

Support our young people by Our Youth Service works with children and young people between the ages of eight and 25. Age appropriate one-to-one work is carried out at home, school or in a mutually agreed place. Our Youth Advisors also offer opportunities for young people to meet up, learn about Huntington’s disease and talk about their own experiences through group work and activities. 

Support Workers can offer a ‘financial health check’ to individuals and families facing household hardship as a result of Huntington’s disease. You can also receive advice about benefits, debt management, planning for the future and pensions.

Together we empower families

We facilitate a carers days which are run by family members. These enable people to meet informally with others from the Huntington’s disease community to socialise, share information and generate ideas for fundraising at local level.

We run the National conference bringing research, clinical staff and families together.