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.

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 and the Sydney Children’s Hospitals Network are working with CamRARE to develop versions of their Rare Patient Passport for patients at their services in Australia.

The information on this page is intended as a guide only, and provides examples of resources that have been shared with RVA as being 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 of these 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.