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A-Z LIST of Rare Disease Patient Organisations

Below is an A-Z list of rare disease patient organisations. Please note that RVA does not necessarily endorse or monitor each group's operational governance. 


If you have searched our A-Z directory list of rare disease patient organisations and can't find a support group, it may be that a group doesn't currently exist that suits your needs. There are a range of other options to provide support. There are support services available, specific to genetic and rare diseases that are funded by State Governments in Victoria, New South Wales and Western Australia.  Please refer to our Helpful Information page to locate details.


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Retroperitoneal Fibrosis Group