RARE Portal Survey: Share Your Feedback

Your feedback assists Rare Voices Australia (RVA) with improving the RARE Portal. By submitting this form, you agree that RVA may also use/share the information provided for grant activity reporting. The survey will take approximately 2 minutes to complete.

Question Title

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

Person living with a rare disease

Parent/caregiver

Rare disease group/organisation leader

Health professional

Researcher

Government

Industry

Other

Question Title

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

Question Title

3. Were you able to find information on the RARE Portal easily? (Required.)

Yes

Unsure

Question Title

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

Question Title

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

Yes

Unsure

Question Title

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.

RARE Portal Survey: Share Your Feedback

Question Title

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

Question Title

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

Question Title

* 3. Were you able to find information on the RARE Portal easily? (Required.)

Question Title

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

Question Title

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

Question Title

* 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.

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

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

3. Were you able to find information on the RARE Portal easily? (Required.)

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

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

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.