Other Neurological Organisations

This is a list of neurological-related community & support groups in New Zealand available to provide information and support services relating to specific disorders/conditions. The list contains links to the groups’ websites and contact details for their national offices or headquarters. Please call the Neurological Foundation for an up-to-date list of regional contacts, or get in touch with the group directly.

  • Alzheimers New Zealand

    http://www.alzheimers.org.nz

    Alzheimers New Zealand Incorporated is a not-for-profit organisation with 21 Alzheimers member organisations located throughout the country that provide support, information, education programmes and services appropriate to their local community. At a national level, Alzheimers New Zealand represents people with dementia, their carers and families/whānau, through advocacy, raising public awareness and providing information such as resources, a library and the quarterly publication Alzheimers News. We also support the work of our member organisations.

  • Aphasia New Zealand (AphasiaNZ) Charitable Trust

    http://www.aphasia.org.nz

    Aphasia is the partial or total loss of the ability to articulate ideas or comprehend spoken or written language, resulting from damage to the brain caused by injury or disease. AphasiaNZ provides services, support, education, information and advocacy for the estimated 16,000 New Zealanders living with aphasia.

  • Australasian Tuberous Sclerosis Society

    http://www.atss.org.au

    Tuberous Sclerosis Complex (TSC) affects more than 3000 individuals in Australia and New Zealand and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC.

    ATSS empowers people affected by TSC through access to the best treatment options, up to date information and support.

  • Australian and New Zealand Association of Neurologists

    http://www.anzan.org.au

    ANZAN aims to ensure that high standards of clinical neurology are practised in Australia and New Zealand by playing an active role in training, continuing education and encouragement of teaching and research.

  • Autism New Zealand Inc.

    http://www.autismnz.org.nz

    Autism New Zealand Inc. provides support, training, advocacy, resources and information on Autism Spectrum disorders including Aspergers Syndrome. Our members include children, young adults and adults on the autism spectrum; their family/whanau; caregivers; and professionals who work within this field.

  • Brain Injury Association New Zealand

    http://www.brain-injury.org.nz

    Supporting New Zealanders living with brain injury. There are 14 Regional Brain Injury Association offices providing support, education and information services throughout New Zealand.

  • Cerebral Palsy Group

    https://cerebralpalsygroup.com/

    We are a purely informational online hub dedicated to provide educational information and support to those who who suffer from cerebral palsy and their families. 

  • Cerebral Palsy Guidance

    http://www.cerebralpalsyguidance.com/

    Cerebral Palsy Guidance provides parents of children with cerebral palsy access to reliable and accurate information on a very complex condition. From information on cerebral palsy symptoms to financial assistance to daily living articles, CerebralPalsyGuidance.com covers all aspects of cerebral palsy. And all of the information is thoroughly researched and cited.

  • Cerebral Palsy Guide

    http://www.cerebralpalsyguide.com/

    We are a new site whose main goal is to raise awareness about cerebral palsy and the children and parents who it affects. Cerebral palsy is a disease that can affect children and adults in different ways, but most commonly is affects their coordination and muscle movement. Each year, 10,000 children are diagnosed in the United States. Cerebral Palsy Guide provides free educational information, financial options, and emotional support for those affected by cerebral palsy.

  • Cerebral Palsy Society of New Zealand

    http://www.cpsociety.org.nz

    The Cerebral Palsy Society of NZ's mission is 'To enhance the lives of people with cerebral palsy in NZ, by empowering them to make their own choices'. Cerebral Palsy is a term used to describe a group of disabling conditions, which affect movement and posture. It is caused by a defect or lesion to one or more specific areas of the brain, usually occurring during foetal development before, during or shortly following birth or during infancy. "Cerebral" refers to the brain and "Palsy" to muscle weakness and poor control.

  • Cerebral Palsy Symptoms.

    http://www.cerebralpalsysymptoms.com/

    Our mission at cerebralpalsymptoms.com is to provide the public with accurate and up to date information on the many aspects of cerebral palsy and other complications that occur during birth. Our team strives to provide a comprehensive free resource to gain awareness of these life altering injuries. 

  • Dyspraxia Support Group of New Zealand

    http://www.dyspraxia.org.nz

    Developmental Dyspraxia (also known as Developmental Co-ordination Disorder, and the Clumsy Child Syndrome) is a neurologically based disorder of the processes involved in praxis or the planning of movement to achieve a predetermined idea or purpose, which may affect the acquisition of new skills and the execution of those already learned. More specifically, it is a disorder of praxis, or the process of ideation (forming an idea of using a known movement to achieve a planned purpose), motor planning (planning the action needed to achieve the idea), and execution (carrying out the planned movement). This parent-initiated, voluntary support group for all who care for children with Developmental Dyspraxia, was formed in June 1992, and is unique in the help, support and information it provides. Our membership now numbers over 1,000, and includes families, caregivers, and professionals from both New Zealand, Australia, with some members also in other countries.

  • Epilepsy New Zealand

    http://www.epilepsy.org.nz

    Epilepsy is a common neurological disorder that affects 1% to 2% of the population. The people affected have recurring and spontaneous seizures. There are different types of seizures but they are always due to bursts of electrical activity in the brain. These bursts are caused by a chemical imbalance responsible for the transmission of impulses. The cause of epilepsy can be due to severe head injury, strokes, birth trauma, brain tumours, toxins, brain infection, brain diseases, genetic condition or drug abuse. In many cases the cause is unknown.

    Epilepsy New Zealand provides support for those with the condition and awareness for those around them. Trained field officers offer support and epilepsy education to people with epilepsy, their families and whanau.

  • Guillain Barré Syndrome Support Group NZ Trust

    http://www.gbsnz.org.nz

    The Guillain Barré (pronounced gee-lane bah-ray) Syndrome Support Group New Zealand Trust is a support group for sufferers and survivors of Guillain Barré Syndrome. Guillain Barré Syndrome is an inflammation of the peripheral nerves connecting the skin and muscles to the central nervous system and leads to progressive weakness in the arms and legs. It is caused by the body's own immune system turning on itself and attacking the nerves by mistake.

  • Huntington's Disease Associations of New Zealand

    http://www.huntingtons.org.nz

    Huntington disease (HD) is an inherited brain disorder that causes cells in specific parts of the brain to die which results in impairment of both mental capability and physical control. Huntingtons disease is a genetic disorder. About one in every 10,000 people has HD, but one in every 1,000 are touched by HD whether at risk, as a caregiver, family member or friend. The HD gene is dominant, which means that each child born to a parent with Huntington disease has a 50% chance of sharing the same fate.

    The Huntington's Disease Associations aim to provide support and advocacy for those with Huntington's Disease, to provide information and support to family members and associates, to act as a source of information for professionals involved with Huntington's Disease, to raise public awareness on Huntington's Disease. Unable to support a national organisation, the three associations function separately to meet the needs of their members, but co-operate when it is appropriate (bringing speakers from overseas, awareness weeks, conferences and the website). In areas where the Huntington's Disease Associations cannot support their own social worker/field worker the local Multiple Sclerosis Society includes HD families as their clients: in Midland (Waikato), Bay of Plenty, Marlborough, Nelson and Invercargill.

  • Lysosomal Diseases New Zealand

    http://www.ldnz.org.nz

    Lysosomal storage diseases are inherited genetic defects that result in an enzyme deficiency, which prevents cells from performing their natural recycling function. This leads to a variety of progressive physical and/or mental deterioration. Lysosomal Diseases NZ is a charitable trust dedicated to improve contact between families affected by lysosomal diseases within New Zealand, and supporting research into the causes and treatment of lysosomal diseases and improvements in the clinical care of affected people.

  • Motor Neurone Disease Association of New Zealand Inc.

    http://www.mnda.org.nz

    Motor neurone disease (MND) is the name given to a group of diseases in which the nerve cells - neurones - controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die. With no nerves to activate them, muscles gradually weaken and waste away, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. The patterns of weakness vary from person to person.

    Our MND Association is a small not for profit organisation whose main purpose is to help support people with motor neurone disease and their carers. We have fieldworkers around the country who provide information, advocacy and emotional support and help people have access to the right health services at the right time.

  • Multiple Sclerosis Society of New Zealand

    http://www.msnz.org.nz

    Multiple sclerosis (MS), also known as disseminated sclerosis or encephalomyelitis disseminata, is an inflammatory disease of the central nervous system in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a wide range of signs and symptoms, including physical, mental, and sometimes psychiatric problems. MS takes several forms, with new symptoms either occurring in isolated attacks (relapsing forms) or building up over time (progressive forms). Between attacks, symptoms may go away completely; however, permanent neurological problems often occur, especially as the disease advances.

    MSNZ is a non-profit organisation formed to provide on-going support, education and advocacy for people with MS and their support networks.  It also aims to educate the general public, employers and health professionals about MS and actively funds key research into the condition.

  • Muscular Dystrophy Association of New Zealand Inc.

    http://www.mda.org.nz

    Neuromuscular conditions are genetic and primarily result in muscle wastage and can be devastating for those diagnosed and their families. Symptoms can appear just after birth or for others not until much later in life, they are unpredictable and there is no cure. The MDA is a New Zealand not for profit which provides information and support to the people affected by neuromuscular conditions. We have branches throughout the country which are supported by the National Office based in Auckland.

  • New Zealand Dystonia Patient Network Inc.

    http://www.dystonia.org.nz

    Dystonia is a neurological movement disorder characterised by inappropriate and involuntary muscle movements. It is often misdiagnosed. The disabling, repetitive and sustained muscle spasms typical of dystonia are thought to be due to malfunction of a particular part of the brain, the basal ganglia. The mission of the Dystonia Patient Network is to support dystonia patients with information, advice about living with dystonia and networking opportunities, to increase  awareness about dystonia – both among the medical community and the general public, and to encourage and facilitate research, with the aim of seeking better treatments, prevention, a cure.

  • New Zealand Migraine Sufferers Support Group

    http://homepages.ihug.co.nz/~nzmssg/home.htm

    Our aim is to keep you informed about all aspects of migraine. We wish to reach out to as many people as possible and to offer ongoing advice, support and information, as it becomes available.

  • New Zealand Organisation for Rare Disorders (NZORD)

    http://www.nzord.org.nz

    NZORD, the New Zealand Organisation for Rare Disorders, provides New Zealand's central starting point for information about rare diseases. They will help you find information, help groups get established, promote research, provide a voice and build partnerships.

  • Parkinson's New Zealand (The Parkinsonism Society of New Zealand Inc.)

    http://www.parkinsons.org.nz

    Parkinson’s is a progressive neurodegenerative condition. It is caused by insufficient quantities of dopamine - a chemical in the brain. Dopamine enables quick, well-coordinated movement. When dopamine levels fall, movements become slow and awkward. Parkinson’s has both motor and non-motor symptoms, and while it cannot be cured it can be treated. As Parkinson’s is a progressive condition, it can often take many years to develop and has little effect on life expectancy. Different people will experience a different number and combination of symptoms.

    Parkinson's New Zealand provides: Education, Information and Support for all people with Parkinson's, their caregivers, friends and families.

  • Polio NZ Inc. (formerly Post Polio Support Society of New Zealand Inc.)

    http://www.postpolio.org.nz

    Poliomyelitis, or polio, is a highly contagious viral disease. It was responsible for killing and maiming large numbers of people in the early 20th century. It is transmitted orally and initially infects the small intestine. Most people who contract the disease do so when they are very young, between three and five years old. The initial symptoms of polio are flu-like. In a small minority of cases, the infection spreads beyond the intestine, into the blood stream and invades the central nervous system. In this case, called paralytic polio, the disease is far more serious and can cause floppy limbs or paralysis, which can be permanent. It is this form of polio that may later lead to post polio syndrome. Post polio syndrome is a set of symptoms experienced by many people who have had polio at an early age. The symptoms include fatigue, muscle weakness and muscle and joint pain. These symptoms can be quite debilitating and may compromise health and independence. Post polio syndrome generally begins to appear 20 to 45 years after recovering from polio.

    The Post Polio Support Society of NZ is an incorporated society dedicated to seeking support for people who have had poliomyelitis. It does this through information sharing and where possible, assistance to polio society members and their families, whether or not they are experiencing problems at present.

  • Progressive Supranuclear Palsy (PSP) Support Network

    http://www.parkinsons.org.nz/what-parkinsons/parkinsonism-conditions/progressive-supranuclear-palsy-psp

    PSP is a rare degenerative neurological condition often presenting with similar symptoms to Parkinson’s. The condition begins slowly and continues to get worse (progressive), causes weakness (palsy) by damaging certain parts of the brain above pea-sized structures called nuclei that control eye movements (supranuclear). It is sometimes called Steele-Richardson-Olszewski syndrome.

    An informal PSP Support Network for people with PSP and their families is co-ordinated by Sue Lacy. The support network offers resource information and telephone enquiries to help network people with PSP, carers and families.

  • Restless Legs Syndrome Support Group

    http://www.nzord.org.nz/support_groups/r/restless_legs_syndrome_support_group

    Restless legs syndrome (RLS) is a neurological disorder characterized by throbbing, pulling, creeping, or other unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them. Symptoms occur primarily at night when a person is relaxing or at rest and can increase in severity during the night. Moving the legs relieves the discomfort. Often called paresthesias (abnormal sensations) or dysesthesias (unpleasant abnormal sensations), the sensations range in severity from uncomfortable to irritating to painful.

    This group supports people suffering from Restless Legs (Ekboms) Syndrome or PLMS (periodic limb movement during sleep).

  • SPELD NZ (specific learning disabilities)

    http://www.speld.org.nz

    Dyslexia, ADHD, Dyspraxia, Dysgraphia and Dyscalculia are all specific learning disabilities. Children with Specific Learning Disabilities (SLDs) means those children who have a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which disorder may manifest itself in imperfect ability to listen, think, speak, read, write, spell or do mathematical calculations. Such disorders include such conditions as perceptual difficulties, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia.

    SPELD NZ is a not for profit organisation that provides information, assessment and tuition to families, whanau, schools, businesses and individuals living with SLDs. The aim of the Government's special education policy is to improve learning outcomes for all children and young people with special educational needs at their local school, early childhood centre, or wherever they are educated. The purpose of SPELD NZ, therefore, is to work within the framework established by the Ministry of Education, to assist in reducing underachievement in education by students with dyslexia and other SLDs.

  • Stroke Foundation of New Zealand

    http://www.stroke.org.nz

    A stroke is a brain attack – a sudden interruption of blood flow to part of the brain causing it to stop working and eventually damaging brain cells. The effects can be devastating and may last a lifetime. A stroke is also known as a cerebrovascular accident (CVA).

    The Stroke Foundation is the only organisation in New Zealand dedicated to reducing the incidence of stroke, improving treatment outcomes, and supporting those affected by stroke. The Foundation is a not-for-profit organisation that supports a team of Community Stroke Advisors and dozens of stroke clubs throughout New Zealand. The Stroke Foundation is governed by a Board of Directors. It has a National Office based in Wellington and three regional offices in Auckland (Northern Region), Tauranga (Midland Region) and Christchurch (Southern Region). Our mission is to: save lives, improve outcomes, enhance life after stroke.

  • Superficial Siderosis New Zealand

    http://www.superficialsiderosis.org.nz

    Superficial siderosis (SS) of the central nervous system is a rare brain disorder resulting from chronic, and repeated, slow haemorrhaging into the subarachnoid space, and if accurate international figures were obtainable, would most certainly prove to be evenly spread amongst all nations around the world – the small country of New Zealand does appear to have more than its fair share of diagnosed survivors however. People diagnosed with SS range in age from just a couple of years old, right through to their 80s, though the most common age bracket is the 50s and 60s.

    Dave Hill of Oamaru, diagnosed with SS in 2004 at the age of 52, operates a weblog and as a result of huge interest from survivors around the globe, he formed an international support group with currently more than 80 members in Belgium, Italy, Scotland, Ireland, England, USA, Canada, Central America, South Africa, Australia and New Zealand. A monthly newsletter is published on the blog and serves to assistance members as they battle with the daily distractions thrown at them by the disease. The group also carries out surveys amongst the membership which are made available to world-wide research scientists.

  • The Acoustic Neuroma Association of New Zealand

    http://www.acousticneuroma.org.nz

    The Acoustic Neuroma Association of NZ is is a mutual-aid group, organised and administered by ex-patients and their families. An acoustic neuroma, more correctly called a vestibular schwannoma, is a benign tumour that grows on the eighth cranial nerve. This nerve carries information about hearing and balance from the ear to the brain.

  • Tourette’s Association NZ

    www.tourettes.org.nz

    The Tourette’s Association of New Zealand provides support, information and resources and for children, teens and adults throughout New Zealand living with Tourette’s. Tourette Syndrome is a neurological disorder that presents in childhood and continues through into adulthood. It is characterised by involuntary vocal and motor tics.