This guide is part of the nationally codesigned Rare Disease Disability Toolkit (the Toolkit). It is intended for people living with rare disease disability, their families, and caregivers to use when their eligibility to the National Disability Insurance Scheme (NDIS) is being assessed.

The guide helps people to understand NDIS terminology, describe their condition and support needs clearly, gather appropriate evidence, support health professionals in writing effective letters, and advocate with confidence. It also includes practical information for healthcare practitioners preparing reports and supporting documentation for NDIS applicants or participants.

This resource includes a main guide and extra tools to help you speak up for yourself and use together with your support team.

• Guide: NDIS and Rare Disease Disability – Part 1: Access and Eligibility (PDF)
• Checklist: NDIS Letter of Support – Health Professional (PDF)
• Available Soon: Guidance – Writing a Letter of Support – Health Professional (PDF)

Note: This resource is accurate at the time of publishing (February 2026). The information provided does not necessarily represent the views of Rare Voices Australia (RVA) or imply endorsement. RVA is not liable for any loss, damage, or consequences arising from the use or misuse of this resource.

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Toolkit development was codesigned with people living with rare disease disability and facilitated by RVA. RVA is the national peak body for Australians living with a rare disease.

The Toolkit was funded by the Australian Government through the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS) as part of the Rare Disease Disability Project.