Resources for neuromuscular conditions
We want information about neuromuscular conditions to be easy to find, robust and reliable so that our members get a better experience with their healthcare professionals. We are growing our collection of Standards of Care and Management Guidelines for the rare conditions that we support because by their very nature these conditions are unfamilar to many. Select from the A-Z menu of neuromuscular conditions, to view condition information and care guidelines or recommendations.
MDANZ is a member of the Australiasian Neuromuscular Network (ANN) fostering communities of practice and the advancement of research for the benefit of our members. Allied health and nursing professionals may benefit from joining the AHNA Alliance, a sub-group supported by the ANN. You can find out more about ANN or AHNA at the following website: http://www.ann.org.au
Health professionals guide to working with people with neuromuscular conditions
This resource published by MDANZ is currently under review and is no longer available. A revised resource is expected early next year.
Rare Disorders Parent Guide
Rare Disorders have just released a guide for parents and caregivers of children diagnosed with a rare disorder, titled Raising a child with a rare disorder: A guide for parents and caregivers living in Aotearoa New Zealand.
This booklet has been created by Rare Disorders New Zealand to help parents and caregivers navigate the path in caring for a child with a rare disorder in New Zealand. By gathering insights and advice from parents and caregivers who share this journey, as well as information and resources that may help along the way, we hope to provide a guide of sorts – to help find what works best for each whānau. While we do not have all the answers, we hope this guide provides reassurance that there are many others going through a similar journey and that support is available.
Books and DVDs for loan
MDANZ has a range of books and DVDs for free loan from the National Office in Auckland. Contact us on 0800 800 337 or by email info@mda.org.nz to request a list.
Other libraries available to borrow from free-of-charge are listed below (please note that sometimes you may be required to pay for return postage)
CCS Disability Library:
http://ccsdisabilityaction.softlinkhosting.co.nz/liberty/libraryHome.do
The Hopeworks Foundation Browsery:
Website: http://116.90.132.34/~hopeworks/thebrowsery/
Contact: kate@hopeworks.org.nz