The Rare Disease Disability Toolkit with Rare Voices Australia
Tuesday, 28th July 2026, 12:30-1:30pm AEST
12:30-1:30pm NSW, VIC, QLD, TAS, ACT
12:00-1:00pm SA, NT
10:30-11:30am WA
MAA is pleased to invite you to an educational webinar with Fiona Lawton, Disability Advocacy Manager for Rare Voices Australia (RVA), the national peak body for Australians living with a rare disease.
In this webinar, Fiona will talk to us about what it means to have a rare disease and help us better understand when a rare disease can become a disability. We can then explore the Rare Disease Disability Toolkit, a suite of practical resources that build capacity in disability rights and self-advocacy and support people to better access and navigate disability and other systems.
Myasthenia Gravis can affect each of us a bit differently. Some of us face challenges with daily activities, or our mobility, or it may impact our work. These impacts are real. Fiona will talk about RVA's disability advocacy, the NDIS and supports beyond the NDIS so that you can fully understand what services and supports may be best for you to better manage life with MG.
The MAA is the national peak body for Myasthenic patients in Australia. We aim to provide resources like this so that patients and their families or carers are not only informed but also empowered to manage their MG and live a fulfilling life.
We express our sincere thanks to the MAA private donor who sponsored this webinar.
Fiona Lawton is the Disability Advocacy Manager for Rare Voices Australia, which is leading the national Rare Disease Disability Project.
Fiona has over 25 years of experience working as a senior manager in the government sector across community and stakeholder engagement, safety and risk management, and training. She has a science degree specialising in neurology and postgraduate qualifications in psychology.
Fiona has a son who lives with Angelman syndrome, a rare monogenic neurodevelopmental disorder, and has actively engaged in rare disease support and advocacy for over 18 years. She is a passionate disability advocate and health consumer representative for people living with rare disease and complex disability.
Fiona is the current President of the Angelman Syndrome Association Australia (ASAA), a member of the Disability Representative Organisation (DRO) consortium with Down Syndrome Australia, and part of the Intellectual Disability Peak Working Group led by Down Syndrome and Intellectual Disability Queensland (DSIDQ).
Agenda
- Introduction – 5 minutes
- Presentation by Fiona – 30 minutes
- Q&A session – 20 minutes
- Closing – 5 minutes
If you can’t attend the live webinar, a recording will be shared via the MAA website afterwards.