Rare diseases are often life-long and complex, with support required from several different care professionals. It is not uncommon for Australians living with a rare disease to have 10 or more specialists involved in their care.¹ It can be difficult to keep track of and recall details including, professionals involved in an individual’s care team, current medications and dosages, or the dates of past hospital admissions and significant medical events. This can be even more difficult in an emergency situation or for people experiencing learning and communication difficulties. Limited awareness, knowledge and understanding of rare diseases among health and disability professionals further compounds these challenges.

Having a clear and easy way to record and share information with new health professionals, and others, is one way to reduce the frustration, burden and often triggering experience of accurately recalling and repeating important information. There are several emerging models that can support people living with a rare disease, including their families and carers, and their care teams to record information in a central place where it can be shared easily. Some examples of these models, which are becoming increasingly recognised in Australia, are highlighted on this page.

The information on this page is intended as a guide only. If you are aware of any additional information that may benefit stakeholders with an interest in this page or another page on the RARE Portal, or if you notice any broken links or inaccurate information, please let us know via the Contribute page.

Rare disease support groups/organisations may also have complement resources such as personalised medical information cards specific for a particular rare disease that can be used together with these models. Rare Disease Directory lists relevant support groups/organisations for individual rare diseases, where available.

The Rare Disease NSW’s Rare Condition Passports are short, portable documents that help people living with rare, suspected rare or undiagnosed conditions share important information about themselves, their health, communication, care and individual needs.  They are practical tools that can be especially useful in an emergency department, during a hospital stay, when meeting a new healthcare team, or in other settings where important information needs to be understood quickly.

There are two Rare Passports: one for adults and one for children. The Rare Passports were co-designed with people living with rare conditions and their clinicians across Australia.

The Toolkit brings together the Rare Condition Passports and supporting resources to help people and families understand, complete and use them. The Toolkit contains:

• The Quick Reference Guide – provides a simple introduction to the Rare Condition Passports, how they can help and who can support you to complete one
• The Passports – provide one place to record important information about the person, their health, communication, care and individual needs
• Matching Instruction Manuals – provide more detailed guidance for completing and using each version.

Rare Diseases NSW: Rare Condition Passport videos explain how the Passports can help and how healthcare professionals can support its use.

In collaboration with families and medical professionals, the Cambridge Rare Disease Network (United Kingdom) developed the ‘This is Me’ Rare Patient Passport (the Rare Patient Passport). The Rare Patient Passport was developed in response to key challenges expressed by people living with a rare disease related to communicating about their rare disease and care needs. It is accessible, customisable and free to download, update and print in a variety of formats. A template of the RARE Patient Passport is available to anyone with a rare or undiagnosed condition anywhere in the world. People can create their own personalised healthcare communication tool. Health professionals and clinics can also register to work with the CamRARE team to trial, adopt or adapt the Rare Patient Passport for their particular setting.²

The Rare Care Centre in Western Australia is working with CamRARE to develop versions of their Rare Patient Passport for patients at their services in Australia.

People with rare disease disability may need to manage a lot of information and repeat information many times. The Rare Disease Disability Management Plan (the Plan) resource is designed to make this easier by having important disability, medical, daily living, and support information in one place. The Plan helps make sure the needs, choices, and wishes of people with rare disease disability are understood and respected. It can be shared with care and support teams to ensure care is better coordinated and person-centred.

This resource includes:

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

The Rare Disease Disability Management Plan (the Plan) is part of the nationally codesigned Rare Disease Disability Toolkit (the Toolkit). It was designed with people who live with rare disease disability and led by RVA. The Australian Government funded the Toolkit through the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS).

Living with a rare, progressive condition can mean your disability support needs change over time. Change can be slow, and hard to notice, but can be serious.People living with a rare, progressive condition may experience a change in their disability support needs over time. Change can be slow, and hard to notice, but can be serious. The Rare and progressive disease disability support resources can help people living with a rare, progressive condition and their family and carers recognise changes in disability support needs, describe them, and think about what support may help.

These resources were developed by Mito Foundation as part of the Rare Disease Disability Toolkit. The resources were developed in collaboration with rare, progressive disability communities through surveys, workshops and reviews at each stage of resource development. The Childhood Dementia Initiative, Children’s Tumour Foundation, Connective Tissue Disorders Network Australia and Fragile X Association of Australia contributed to consultation and content creation.

The information on this page is intended as a guide only, and provides examples of resources that may be useful for some individuals. Users should perform their own due diligence regarding whether these resources are suitable for their individual needs, with due consideration of other factors which may include privacy of information, and costs. RVA does not endorse/promote any third party products and does not have any commercial interest in, or receive any commissions or other benefits from, the resources referred to.

The information provided is subject to RVA’s quality assurance processes. However, RVA makes no representation or warranty (express or implied) regarding the currency, completeness, accuracy, reliability, suitability, fitness for purpose, non-infringement of third-party rights, of this information. Please refer to the RARE Portal’s Privacy Statement and Terms of Use for further information.