Welcome to RVA’s A-Z Support Directory. Below, you’ll find a list of rare diseases. Wherever possible, we have listed the relevant support group(s) for each rare disease. Please note: RVA does not necessarily endorse or monitor each group’s operational governance. If a support group is an Australian organisation and/or is an RVA Partner, this is highlighted in the directory. When engaging with an organisation, please consider the following:
- Their registration status according to the Australian Charities and Not-for-profits Commission (ACNC), the national regulator of charities, or the equivalent regulator in the country where the charity is based.
- If they are accepting donations, what information is publicly available regarding how funds are collected and dispersed.
- If the organisation provides support services or advice, the skills and qualifications of personnel.
- Privacy and confidentiality provisions. Please be aware that when sharing information online, the confidentiality of that information cannot be guaranteed. The eSafety Commissioner warns that sharing personal information about minors online may compromise their safety. Learn more.
- Potential conflicts of interest (e.g. commercial interests) and what information is provided about how the organisation declares and manages these conflicts.
- The organisation’s governance (e.g. is there a board or committee?).
The ACNC also has useful information for the public in relation to Australian charities.
If you have searched our A-Z Support Directory and cannot find a support group, it may be that a group doesn’t currently exist to suit your needs.
Please note: this is not intended to be an exhaustive list of the 7,000+ rare diseases. If you run a support group and would like to have the rare disease(s) your group supports listed in the A-Z Support Directory, please contact RVA.
