Resource Library

Here you’ll find more answers to your questions

What's in the library

Here are downloads of tips and guidance, plus we’ve added some helpful documents, so you don’t have to search for them. To save you time, we’ve focused on documents which answer questions that arose during PVI workshops (especially if they come with a good diagram).

Why is it grouped

To make it easier to find what matters to you, information is sorted into three groups: information for patients; carers; and patient groups. Don’t like being put into a box? Select ‘All’ to see everything on the site.

useful sites

Having trouble finding a decision-makers site? Here are some useful links.

Tip Sheets and Guides

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It would be beneficial for the community if there was a way for us to help provide information to our community. However for us to do that we would need to have access to the information.

– Vanessa Richards, Marfan Syndrome patient, Rare Disease Advocate and Secretary of the Marfan Association of Queensland

We need all this on a website, so we can share it online.

– Patient participant at PVI workshop

Useful sites

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