With the number of recognised rare disorders at more than 8000 and rising, their combined prevalence makes them uncommonly common. In people with these disorders, supportive, long-term, consistent and accessible contact with primary care is central and essential. This article provides a heuristic framework for the care and management of a person with a rare disorder and their whānau
Meet the journalists who work on New Zealand Doctor
Curiosity has driven the working life of New Zealand Doctor editor Barbara Fountain, taking her from clinical research, through scientific publishing to land in journalism. She worked at the Otago Daily Times and the business weekly The Independent before joining New Zealand Doctor in 1996, taking time out to have a family. Barbara loves print but also enjoys the grand access to knowledge and stories afforded by the internet. She has previously researched science reporting and the use of official information laws, and in 2016 was the inaugural Editorial Leader of the Year at the national Canon Media Awards. In 2015, she co-founded The Health Media with business partner Anna Mickell, to take over publication of New Zealand Doctor, Pharmacy Today and ELearning.
Deputy editor Ruth Brown joined New Zealand Doctor in May 2014 after nearly 25 years of daily journalism, magazines, specialist publications and short forays into other careers. She worked as a reporter and subeditor in London and returned to New Zealand to delve into the fashion industry for several years before returning gratefully to journalism in 2004. Since then, while raising a couple of girls, she has joined the quest for high-quality, web-based journalism, and worked as content manager for New Zealand Doctor before taking on the deputy editor role in February 2018.
Martin Johnston is an experienced journalist. He worked in daily newspapers for 29 years, mainly at the New Zealand Herald, before coming to New Zealand Doctor. At the Herald he served up a long doses of health news, covering the topic for 17 years – since before DHBs were created. Martin lives with his lovely partner Kaz, with whom he has two adult children. When he gets a chance, Martin loves to go tramping, skiing or rock climbing
An AUT journalism graduate, Simon Maude got his start working as a community news reporter for The North Shore Times in Auckland. Shortly after starting, Simon took these photos that earned him two Australasian PANPA awards. Simon then moved to Stuff.co.nz’s Auckland news bureau, covering everything from breaking news to Auckland issues to lifting the lid on a health practitioner’s dubious methods. Once in a while Simon would write the odd forthright opinion piece or travel story. For some reason Simon likes to run to and from work
Southern correspondent Fiona Cassie brings with her 17 years experience as first journalist and then editor of former magazine and website Nursing Review. Despite living in Christchurch, and so many years immersed in nursing, she likes to think she isn’t one-eyed and brings with her an institutional memory on a wide range of health sector issues. Taranaki-born and bred she has been a journalist for more than three decades in Napier, London, Nelson and, since 1996, in Christchurch. In 2016 she was a finalist in the inaugural NIB Health Journalism Scholarship (Senior). She works four days a week as the Southern correspondent for New Zealand Doctor
Hailing from good ol' Blighty, Zahra grew up in the rural Canterbury countryside in a small village called Swannanoa, so she never thought she'd be a big city gal. But the opportunity with New Zealand Doctor, with an office right next to the beach, was too good to pass up and now she finds herself trying to navigate her way around Auckland. This is her first proper gig as a journalist. A love of writing and telling important stories, fuelled Zahra to pursue a career in journalism, after completing a bachelor’s degree in neuroscience and Japanese at the University of Otago. Many people have questioned the combination of science and the arts, but she believes she has found the perfect fit with New Zealand Doctor. Zahra attained her postgraduate journalism diploma from the University of Canterbury during which time she wrote for Stuff.co.nz, Radio New Zealand, and Vice NZ. She loves exploring beyond her comfort zone not only with her stories but in all aspects of her life, with a love of running, rugby and martial arts. She also enjoys exploring the world, for cultural experiences (and the food!) and has most recently been to Iran, Malaysia and Thailand.
Alan Perrott came to journalism relatively late and rejoiced in becoming INL Young Reporter of the Year at the tender age of 31. After five years with the East & Bays Courier he moved to the New Zealand Herald in 2000. After five years in the newsroom, he shifted into feature writing and spent ten years as staff writer for the paper’s weekend glossy, Canvas. In 2015, he left to try his hand at freelancing and wrote a book, At the Edge of Art, for Wellington engineering company Dunning Thornton. After finding himself missing the energy of a newsroom he has found his way into New Zealand Doctor. With a lovely wife and two young boys (late again), he maintains his sanity by occasionally DJing as The House of Bamboo.