RESOURCES
Watch our research evening series
Alongside our services, we like to keep our community updated with research and best practice information from leading health professionals and researchers in the neuromuscular field. The sessions to the right are live recordings of past sessions. To attend our next Research Evening in-person, find out more here.
Downloadable Resources
We have a developed series of downloadable brochures, as we understand that it’s sometimes easier to have a copy on hand. Please follow the links below to download a copy:
Services & Information Booklet
Advocacy, Counselling & Support Groups
The Australian Neuromuscular Disease Registry (ANMDR)
If you’ve been diagnosed with a neuromuscular condition, we recommend joining the ANMDR. It collects important medical information from adult and child patients across the country to improve clinician and researcher’s understanding of neuromuscular conditions, how to treat them and accelerate the development of new therapies.
The registry hub also makes finding clinics, services, and recruitment into clinical trials more accessible and can increase our ability to attract more clinical trials to Australia.
Find out more and register your interest here
The Loop website
Driven by the Muscular Dystrophy Foundation and thanks to an ILC grant we worked closely with other MD associations across Australia to put together a website that lets you practically prepare and manage your health and wellness and connect with others living with a neuromuscular condition.
It’s a real space between life’s learning curves where you can prepare and share every step and find your voice amongst others following a similar journey.
You can access information on your condition and understand your diagnosis; find practical information on managing your condition as it progresses; create a tailored condition guide by adding your own notes or removing sections that aren’t relevant to you, and you can store information so you can come back later and download a print-friendly document to take to specialists and share with your support network.
Click here to go to The Loop, your neuromuscular resource.
Other Australian MD organisations
If you’ve found yourself on our page but don’t currently live in WA, please click on your State’s organisation from the list below so you can get the right support and access to the services you need.
WATCH OUR RESEARCH EVENING VIDEOS:
