2026 RARE Portal Survey: Share Your Feedback

1.Which stakeholder group best describes you?(Required.)

2.Please check the priority populations you identify with:(Required.)

Person living with a rare disease

Person suspected of having an undiagnosed rare disease

Aboriginal and Torres Strait Islander

Culturally and linguistically diverse (CALD) background

Person with a disability

Person currently experiencing socio-economic disadvantage

Person living in regional, rural or remote location

None of the above

3.What information on the RARE Portal was most helpful?(Required.)

4.How can we improve the RARE Portal?(Required.)

5.Would you visit the RARE Portal again?(Required.)

Yes

No

Unsure

6.Is there anything else about the RARE Portal you would like to share? If you could not find a dedicated page for your specific rare disease, RVA is adding conditions as quickly as possible to the site. Feel free to share your rare disease here, and we’ll add it to our list.(Required.)