Medical

Clinical Support

Aotearoa NZ is a small country with a population of approx 5.223 million (2023) spread out across two separate, elongated islands. If Angelman syndrome occurs in approx 1: 15000 live births, we should expect to see approx. 350 people living with AS in this country.

However, due to privacy issues, general disinterest, misdiagosed, and many undiagnosed cases, we only know of around 80. This low figure has made it difficult to pursue the establishment of Angelman syndrome clinics in our NZ Health system.

In Aotearoa NZ, there is a great need to action the Rare Disorders Strategy in the new health system. We also need our own national Standards of Care documents for AS, and an accessible national Centre of Expertise for physicians.

Because there is no formal registry for Angelman syndrome in Aotearoa NZ, we encourage all families impacted by Angelman syndrome to register on the Global Angelman syndrome Registry. This registry project is a community collaboration to be used to improve the lives of all who have been diagnosed or are yet to be diagnosed with Angelman syndrome.

Clinical Support Services

Clincial Support services in Aotearoa NZ are very sparse for patients with Angelman syndrome.

Health New Zealand -Te Whatu Ora (the NZ Health system) is currently in a state of flux, undergoing many changes as part of a review process. This page will be updated as new information is shared.

Learning & Development Support before your child starts school

If your child needs extra support for learning and development, there are early intervention supports available. These supports help tamariki (children) at home and in their early learning centres. They are available from birth through to starting school.

Genetic Testing

Genetic Health Service NZ:
A national service, with Hubs covering three regions; Northern, Central, South Island.

Clinical Geneticists are medical doctors with specialist training in medical genetics. Patients are likely to see them before a diagnosis has been made.

Genetic Counsellors (also known as Genetic Associates) are healthcare professionals with training in human genetics and counselling. Genetic Counsellors are certified through the Human Genetics Society of Australasia. Patients are likely to see them about a known condition.

Neurological Rehabilitation/Intensive Programs

New Zealand Foundation for Conductive Education | Matauranga Whanonga i Aotearoa: Early Intervention and Rehabilitation programmes for Children and Adults across the motu. See their website to find your local centre.

Adult Conductive Education Trust: The Adult Conductive Education Trust runs a re/habilitation programme based in Christchurch, New Zealand. The purpose is to help those with motor delays and neurological disorders to develop key motor skills, cognitive skills and social, emotional, communication skills, all of which are essential for quality of life.

Centre of Movement: Paediatric Neurological Rehabilitation Clinic based in Burleigh Heads, Gold Coast, Australia. Recently, the Intensive Therapy Sessions have become available in pop-up venues, in Christchurch and Rotorua, NZ. Sign up for their newsletters. See their website for more information and details.

Wilson Centre for Children: A children's health facility in Takapuna, Auckland, catering to inpatients, day patients and outpatients. It provides comprehensive, family-centred rehabilitation services to children from 0 -16 years, or while still at school. It has a purpose-built playground, hydrotherapy pool and gardens.

Planning for Future AS Clinics

The Angelman Network is a member of the Rare Disorders NZ collective.

Rare Disorders Strategy

On 25 July 2024 Aotearoa New Zealand’s first Rare Disorders Strategy was released. Developed by Manatū Hauora | Ministry of Health, the Rare Disorders Strategy is the first high level, documented intention to improve the health and wellbeing of people living with a rare disorder and their whānau. However, there has been no action since, to begin implementing the intentions in the Strategy.

Rare Disorders NZ has launched a petition calling for Te Whatu Ora - Health NZ to urgently begin planning the implementation of the Rare Disorders Strategy. Please read and sign the petition here.

Rare Support Centre Aotearoa

Rare Disorders NZ has developed a proposal for a Rare and Undiagnosed Disorders Centre of Expertise in the health system, which we believe will make a significant difference to the health and wellbeing of the 300 000 New Zealanders living with a rare disorder. The Centre will identify gaps in the delivery of service and support in New Zealand’s health and other systems for people living with rare disorders, similar to other initiatives globally.

Read more about the proposed Rare Support Centre Aotearoa.

Autism Research Clinic

On 27 November 2024, the Autism Research Clinic was officially launched by the University of Auckland Centre for Brain Research director, Distinguished Professor Sir Richard Faull.