The resources on this page are part of the nationally codesigned Rare Disease Disability Toolkit (the Toolkit).

This resource includes:

• A guide to help you develop your own Rare Disease Disability Management Plan (the Plan).
• A fillable form.

The guide helps you create a Plan that has important disability, medical, daily living, and support information in one place. The Plan helps make sure your needs, choices, and wishes are understood and respected.

Use this resource to help you speak up for yourself and use together with your support team. The fillable Plan can be edited until Part 3 is signed. Once Part 3 is signed, you can download the fillable form again to create an updated Plan.

• Guide: Rare Disease Disability Management Plan (PDF)
• Fillable Form: Rare Disease Disability Management Plan (PDF)

This guide is for individuals and caregivers living with rare disability to use in healthcare settings. It may help you better understand what reasonable adjustments are, why they matter, and how you can ask for them.

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

• Full Guide: Reasonable Adjustments in Healthcare: What Can I Ask For? (PDF)
• Summary Guide: Reasonable Adjustments in Healthcare: What Can I Ask For? (PDF)
• Checklist: My Healthcare Reasonable Adjustments: What Can I Ask For? (PDF)
• Checklist: My Hospital Reasonable Adjustments: What Can I Ask For? (PDF)
• Example Letter: Medical Practitioner Letter: Reasonable Adjustments in Hospital (PDF)

Microsoft Edge can translate any text from a PDF document to a different language. You can also choose to have documents read aloud.

Toolkit development was codesigned with people living with rare disease disability and facilitated by Rare Voices Australia (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.

Note: All Toolkit resources are accurate at the time of publishing. The information provided does not necessarily represent the views of RVA or imply endorsement. RVA is not liable for any loss, damage, or consequences arising from the use or misuse of these resources.