Care for Rare Survey

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The Genetic Support Network of Victoria (GSNV) is committed to ensuring that genetic, undiagnosed and rare disease (GUaRD) support groups and organisations can access and harness information, resources and supports to enable the delivery of their vision, mission and strategies as they need to support the community they exist to serve.

The 2023 Care for Rare program is being established with consideration for the activities and feedback provided from Supporting the Supporters and Strengthening the Support Sector activities of previous years.

To ensure the Care4Rare program focusses on areas of greatest need, we would value feedback from you and your colleagues. This brief survey includes:

Your current status/profile as a GUaRD support group/organisation
Challenges and opportunities of most importance to your organisation and community
Your understanding of what the GSNV currently has to offer
Expectations of the GSNV and what would help you

This will be the first in a series of surveys and polls sent to you throughout the year, ensuring that activities and resources are relevant to the changing needs of the sector we exist to support.

If you have any questions about this survey or the program in general please reach out via email to: info@gsnv.org.au

Welcome to Care 4 Rare:

Your Support Group

This section is intended to provide some details about the group you are affiliated with so that we can tailor our engagement with you and the wider group as Care for Rare progresses.

Name of the support group you are affiliated with(Required)

Support Group Email(Required)

The email we’re best to use to contact your support group.

Support group phone(Required)

Please provide a contact number for the group

Contact

First name only

Support Group website

What social media accounts does the group have?

Provide links to social media accounts

In what ways does the group engage with its community?(Required)

Please select all that apply. Use the shift and ctrl keys to multiselect

If you selected other above please provide details

How long has the group been engaged with GSNV?

provide your best guess if you are unsure.

Your Engagement

Now we’ll ask some questions about you and your understanding and expectations of what GSNV has to offer you and your support group

Name(Required)

First Last

What services and supports are you aware of the GSNV providing?

Please add a new line for each service and support you are aware of.

How supported do you and your support group feel by the GSNV?(Required)

What new or existing supports in the Care for Rare program would you engage with?

Please select all that apply. Use the shift and ctrl keys to multiselect

Are there other supports within Care for Rare or other programs you would like to see delivered by the GSNV?

Do you regularly access supports within the genetic, undiangosed and rare disease sector to support you in your employment or volunteer role?

How likely are you to engage with planned activities as part of Care for Rare?

How often would you like the Care for Rare newsletter to land in your inbox?

If you were to participate in an open online forum for GUaRD groups what platform would you prefer to engage with

Are there other platforms you think we should be considering? If so, please provide details.

On average, how much time, per month, would you be prepared to engage with the Care for Rare program?(Required)

Is there someone else in your group we should also be asking these questions of? Please provide their first name and email address:

Do you have any other comments or suggestions for us relating to the Care for Rare program?

Welcome to Care 4 Rare:

Your Support Group

This section is intended to provide some details about the group you are affiliated with so that we can tailor our engagement with you and the wider group as Care for Rare progresses.

Name of the support group you are affiliated with(Required)

Support Group Email(Required)

The email we're best to use to contact your support group.

Support group phone(Required)

Please provide a contact number for the group

Contact

First name only

Support Group website

What social media accounts does the group have?

Provide links to social media accounts

In what ways does the group engage with its community?(Required)

Please select all that apply. Use the shift and ctrl keys to multiselect

If you selected other above please provide details

How long has the group been engaged with GSNV?

provide your best guess if you are unsure.

Your Engagement

Now we'll ask some questions about you and your understanding and expectations of what GSNV has to offer you and your support group