The Vulval Pain Network — Privacy Notice

**Last updated:** [02/10/2026]

Who we are

The Vulval Pain Network is an independent community initiative being developed to provide peer support, connection and information for people living with vulval pain.

For this interest form, the person responsible for your information is the organiser of The Vulval Pain Network. You can contact us at: info@thevulvalpainnetwork.org.uk

What information do we collect?

This form may collect:

* Your email address, if you choose to provide it.

* Your general location.

* Your preferences for meeting times and format.

* Your answers about what you would like from a support group.

* Any other information you choose to provide in optional questions.

**Please do not include detailed medical information or anything else you would prefer to keep private.**

Why do we collect this information?

We use your responses to:

* Understand whether there is interest in a local vulval pain support group.

* Identify suitable locations, meeting times and formats.

* Understand what potential attendees would find helpful.

* Contact you about the group’s development and its first meeting, if you have provided your email address and asked to hear from us.

Completing this form does not commit you to attending a meeting.

How is your information stored and shared?

Responses are collected through Google Forms and stored using Google services. Access to the responses will be restricted to the group organiser.

We will not sell your personal information or share it with other organisations for their own marketing. We will not provide identifiable responses to GP surgeries, clinics or other organisations approached to display our posters.

Google processes information in accordance with its own terms and privacy policies.

How long will we keep your information?

 We will keep interest-form responses only for as long as needed to assess interest and organise the initial meetings. We will review the information after the initial launch period and securely delete information that is no longer needed.

If you ask us to remove your contact details earlier, you can contact us at info@thevulvalpainnetwork.org.uk

Your choices and rights

Providing your email address is optional. You can ask to access, correct or delete your personal information, subject to applicable legal requirements.

You can also ask us to stop contacting you at any time by emailing us.

Questions or concerns

If you have questions about how your information is used, please contact us at info@thevulvalpainnetwork.org.uk

You can also find information about your data-protection rights and how to raise a concern on the Information Commissioner’s Office website: https://ico.org.uk/