Skip to content
AWCH Logo 2019
  • About
    • About AWCH
    • History
    • Board
    • Staff
    • Join AWCH
  • What We Do
    • For Health Professionals
    • For Families
    • Ward Grandparent Program
    • Rights of the Child
  • Resources
    • Projects
    • Documents
    • Blog
    • AWCH Library
  • Contact Us
  • Donate
  • Walking The Talk
Menu
  • About
    • About AWCH
    • History
    • Board
    • Staff
    • Join AWCH
  • What We Do
    • For Health Professionals
    • For Families
    • Ward Grandparent Program
    • Rights of the Child
  • Resources
    • Projects
    • Documents
    • Blog
    • AWCH Library
  • Contact Us
  • Donate
  • Walking The Talk

The Australian Experience of Living with a Rare Disease: personal stories – review

  • February 28, 2014
  • , 8:30 am
  • , Childrens Health Rights


Rare Voices Australia, 2014.
Rare Voices Australia has recently published, “The Australian Experience of Living with a Rare Disease: personal stories”.  This is a personal look at the daily lives of individuals and families who are generous enough to share their experiences.  It also captures the growing awareness of why we need to join together for better care.  A co-ordinated approach for access to services within Australia for people living with a rare disease is a key message.
The Stories
The individual stories in this book are simply written and provide real insight. Listening to the stories and recognising patient expertise, is described as the key to working in collaboration and reaching better health outcomes.  The patient stories help build greater understanding. Chapters begin with a brief description followed by stories.  Each story has a colourful portrait photo.  For example, in the Diagnosis chapter, Kerry tells, “it took 49 years to diagnose my rare disease”.  In Jessica’s story her mother Sharon describes how “our journey to diagnosis wasn’t easy.  We waited several months to receive genetic test results from the USA”.
The reader will benefit from the easy-to-read stories, health professionals can be challenged by patient experiences; government bodies can see the value of a co-ordinated approach to the daily lives of Australian families living with rare disease.  “The Australian Experience of Living with a Rare Disease: personal stories” is a wonderful resource. Many of the individuals and families in the book have also taken up the role of advocate, working with others through support networks. Find links to support resources throughout the book.
Visit the Rare Voices Australia website to view “The Australian Experience of Living with a Rare Disease: personal stories”. The book is downloadable in PDF ( http://www.rarevoices.org.au/).  
A hardcopy is also available for loan from the AWCH library.
Jillian Rattray
AWCH Librarian
February, 2014

Share this post

AWCH Logo 2019

Advocating for the needs of children, young people and their families within the healthcare system

Quicklinks

  • For Health Professionals
  • For Families
  • Ward Grandparent Program
  • Healthcare rights for children
  • Projects
  • Join AWCH

Follow Us

Facebook Twitter Instagram Linkedin Pinterest

Contact Us

Association for the Wellbeing of Children in Healthcare (AWCH)

Building 40B
Gladesville Hospital
Cnr Victoria & Punt Roads
Gladesville NSW 2111
Australia

Tel: 02 9817 2439
Email: awch@awch.com.au

Accredited By

AWCH Accreditation logo

Funded By

The Association for the Wellbeing of Children in Healthcare acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connections to lands, water and communities. 
We pay our respects to Aboriginal and Torres Strait Islander cultures; and to elders past and present.

Copyright © 2022 - Association for the Wellbeing of Children in Healthcare - All rights reserved