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Free resource · Available now
Essential information. In one place. Ready to share.
The Rare Condition Passports are short, portable resources that help people living with rare, suspected rare or undiagnosed conditions communicate important information about themselves, their health, care, communication needs and preferences.
Keep your Passport with you and use it to support communication when visiting an emergency department, staying in hospital, meeting a new healthcare team or whenever important information needs to be understood quickly.
Passport & Toolkit
The Rare Condition Passport and supporting Toolkit are free to use. Before accessing the resources, we ask you to provide a few details to help Rare Diseases NSW understand who is using the Passport, where it is reaching and support its ongoing evaluation and improvement.
Included in the Toolkit
After completing the short access form, you can choose which resources are right for you or the person you support. You can access any or all of the resources.
Tell us a little about you and where you're located.
When you submit the form, you'll be taken directly to the Passport and Toolkit resources.
Download the Quick Reference Guide, relevant Passport and corresponding Instruction Manual.
Using the Passports
The Toolkit brings together the Rare Condition Passports and supporting resources to help people and families understand, complete and use them. Choose the resources that are relevant to you—you do not need to read everything before getting started.
The Quick Reference Guide provides an introduction, the Passports hold the information the person wants to share, and the matching Instruction Manuals provide more detailed guidance for completing and using each version.
A simple introduction to the Rare Condition Passports, how they can help and who can support you to complete one.
One Quick Reference Guide
A useful starting point before completing a Passport
The Passports provide one place to record important information about the person, their health, communication, care and individual needs.
Adult Rare Condition Passport
Child & Young Person Rare Condition Passport
Each Passport has a corresponding Instruction Manual with more detailed guidance to support completion and use.
Adult Instruction Manual
Child & Young Person Instruction Manual
A practical approach
The Passports are designed to be useful in real life. Take them one step at a time and focus on the information that is most important for the person and their care.
Choose either the Adult Rare Condition Passport or the Child & Young Person Rare Condition Passport.
Use the corresponding Instruction Manual for additional guidance as you work through the Passport.
Add the information you already have and what you want other people to understand about you or the person you support.
Ask a clinician, care navigator or another appropriate member of the care team to help with information that needs their input.
Keep the completed Passport accessible, share it when you choose and update it when important information changes.
Support
People and families can complete the information they know and want to share, while clinicians, care navigators and other members of the care team can help with relevant health and care information.
Depending on your circumstances and care team, support may come from one or more people involved in your healthcare or care coordination.
Working together
A member of the care team can help confirm or explain relevant health information for inclusion in the Passport.
The matching Instruction Manual can be used alongside the Passport to help work through sections that need additional guidance.
Your care team can help identify when important health or care information has changed and may need to be updated.
What’s included
The Rare Condition Passports bring together information that can help other people understand the person, their health, their care and what matters to them.
Key information about the person and the people who are important in their life and care.
Information about the person’s rare, suspected rare or undiagnosed condition and what others may need to understand about it.
How the person communicates, understands information and prefers other people to communicate with them.
Relevant healthcare information and details that may help others understand the person’s care.
Important information about medicines, treatments and other relevant aspects of care.
Information that may help others recognise important changes, concerns or situations that need attention.
Practical information about the person’s individual care, support and accessibility needs.
The preferences, priorities and other information the person or family wants others to know.
FAQs
Practical answers to help people, families and care teams understand how the Rare Condition Passports can be completed, kept and used.
The Passports are designed for people living with rare, suspected rare or undiagnosed conditions. There is an Adult Rare Condition Passport and a Child & Young Person Rare Condition Passport.
No. The Passports are intended for people living with rare, suspected rare or undiagnosed conditions.
People and families can complete information they know and want to share. Clinicians, care navigators and other appropriate members of the care team can help with relevant health and care information.
The matching Instruction Manual provides additional guidance for working through the Passport.
You can work through the Passport over time. Start with information you already know and the information that is most important for other people to understand.
The Passport can then be reviewed and updated as information changes.
A Passport may be useful when important information needs to be communicated—for example, during healthcare appointments, a hospital presentation or admission, when meeting a new care team, or in other relevant care and support settings.
The person or family decides when and with whom the Passport is shared. It can be shown to healthcare professionals or other people when the information in it would be useful.
Keep it somewhere that is easy to access when you need it. The important thing is that you or the people supporting you can find it when information needs to be shared.
Review it when important information changes, including changes to health, care, medicines, communication or support needs.
It is also useful to review the Passport periodically to make sure the information remains current.
No. A Rare Condition Passport is a practical communication tool that brings important information together in one place. It does not replace a person’s clinical or medical record.
No. The Passport should be used alongside any condition-specific emergency, action or management plans that have been provided by the person’s healthcare team.
Feedback & evaluation
The Rare Condition Passports have been designed to be useful in real-world care. We want to understand how they work for people, families and healthcare professionals so we can continue to learn and improve.
Have you used the Passports?
If you have experience using a Rare Condition Passport, you can register your interest in being contacted about providing feedback as part of our evaluation and research project.
The information you choose to provide is stored securely in Qualtrics, which is connected to UNSW Sydney through an institutional licence.
It will only be used to contact you about providing feedback on the Rare Condition Passports as part of an evaluation and research project.
When we contact you to provide feedback about the Rare Condition Passports, this will be as part of a research study approved by the UNSW Human Research Ethics Committee (Project ID 9310).
Your information will be kept confidential and can only be accessed by researchers at Rare Diseases NSW, UNSW Sydney who are involved in this project.
For more information about how UNSW Sydney manages personal information, please refer to the UNSW Privacy Statement .
If you would like your information updated or removed at any time, please contact Dr Lauren Kelada or the Rare Diseases NSW team .