Last updated: 18 August 2026

About this privacy policy

What Is HD? is an independent Huntington’s disease awareness website created and operated by Steve Lewis.

We respect your privacy and understand that some of the information shared through this website may be personal or sensitive. This policy explains what information we collect, why we collect it and how it is handled.

If you have any questions about this privacy policy or information you have submitted, please email hello@whatishd.co.uk.

Information we may collect

Depending on how you use the website, we may collect:

• Your name
• Your email address
• Your telephone number, if you choose to provide it
• Messages, questions or comments you submit
• Personal stories or experiences relating to Huntington’s disease
• Photographs you choose to upload
• The name you would like displayed if your contribution is published
• Your permission to publish a story, photograph, tribute, question or community contribution

We only ask for information that is relevant to the reason you are contacting us.

How we use your information

Information submitted through the website may be used to:

• Respond to your message or enquiry
• Review a family story, community contribution, question or tribute
• Contact you if we need to clarify something you have submitted
• Publish your contribution when you have clearly given permission
• Moderate comments and help keep the website safe and respectful
• Operate and improve the What Is HD? website

Your email address and telephone number will not be displayed publicly.

Stories, photographs and contributions

Family stories, photographs, tributes and community contributions are reviewed before publication.

Submitting something does not guarantee that it will be published. We may make small spelling or formatting corrections, but we will not deliberately change the meaning of your contribution.

We will only publish a contribution when permission has been provided. Wherever possible, we will display your name in the way you have requested, including first name only or anonymously.

Please only submit photographs or information that you have the right and permission to share. Extra care should be taken when submitting information or photographs involving children or another living person.

Sensitive health information

Some contributions may include information about a person’s health, genetic risk or experience of Huntington’s disease. This may be considered sensitive personal information.

Please only include information that you are comfortable sharing. Sensitive information will only be considered for publication where clear permission has been given.

Comments and moderation

Comments submitted to The HD Hub are held for review before appearing publicly.

We may choose not to publish, or may remove, comments that contain private medical information, personal contact details, offensive language, abuse, advertising, spam or information about another person shared without permission.

Email addresses supplied with comments are visible to the website administrator but are not displayed publicly.

How information is stored

The website and its forms are provided through Webador. Information submitted through the website may therefore be processed and stored using Webador’s services.

We take reasonable steps to protect the information submitted to us and restrict access to those who need it to operate the website.

We do not sell your personal information.

How long we keep information

We will only keep personal information for as long as it is reasonably needed for the purpose for which it was submitted.

Published stories, tributes and community contributions may remain on the website until the contributor asks for them to be removed or there is another reason why they should no longer be displayed.

Requests to change or remove information

You may contact us to:

• Ask what personal information we hold about you
• Correct information that is inaccurate
• Withdraw permission for a contribution to be published
• Ask for your story, photograph, comment or other personal information to be removed

Requests can be sent to hello@whatishd.co.uk. We may need to confirm your identity before making changes involving personal information.

Cookies and website statistics

Webador may use necessary cookies to operate the website and may provide general website statistics, such as the number of visits to a page.

Your browser may allow you to control or delete cookies. More information about cookies used by the website may also be provided through Webador’s cookie notice or settings.

Links to other websites

What Is HD? contains links to other websites, including support organisations, fundraising pages and social-media platforms.

We are not responsible for the privacy practices or content of external websites. Please check their own privacy policies when visiting them.

Medical information

Information on What Is HD? is provided for general awareness and is based partly on lived family experience. It should not replace professional medical advice, diagnosis or treatment.

Changes to this policy

This privacy policy may be updated if the website changes or new features are introduced. The date at the top of the page will show when it was last updated.

Contact

For privacy questions or requests concerning your information, please email:

hello@whatishd.co.uk