1. Who We Are
Our website address is: https://vwdalliance.org.
We are a non-profit organisation focused on supporting and educating individuals affected by Von Willebrand Disease (VWD).
2. What Personal Data We Collect and Why We Collect It
Comments
When visitors leave comments on the site, we collect the data shown in the comments form, as well as the visitor’s IP address and browser user agent string to help with spam detection.
An anonymised string (hash) created from your email address may be sent to the Gravatar service to check if you are using it. The Gravatar service privacy policy is available at: https://automattic.com/privacy. After your comment is approved, your profile picture is visible to the public in the context of your comment.
Media
If you upload images to the website, avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract location data from images on the site.
Cookies
If you leave a comment on our site, you may opt-in to saving your name, email address, and website in cookies. These are for your convenience and last for one year.
If you visit our login page, we set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.
When you log in:
- We set cookies to save your login info and screen display choices.
- Login cookies last two days; screen option cookies last one year.
- Selecting “Remember Me” extends login cookies for two weeks.
- Logging out removes login cookies.
If you edit or publish an article, an additional cookie will be stored in your browser. This cookie contains no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.
Embedded Content from Other Websites
Articles on this site may include embedded content (e.g., videos, images, articles). Embedded content from other websites behaves the same as if you visited the original site directly.
These external sites may:
- Collect data about you.
- Use cookies.
- Embed additional third-party tracking.
- Monitor your interaction with that content (especially if you are logged into their services).
3. How We Use Your Data
We use your information to:
- Respond to your inquiries.
- Provide requested services or newsletters.
- Improve our website performance and user experience.
- Ensure website security and protect against spam.
4. Who We Share Your Data With
We do not sell or rent your personal data.
If you request a password reset, your IP address may be included in the reset email. Comments may also be scanned by an automated spam detection service.
5. How Long We Retain Your Data
If you leave a comment, the comment and its metadata are retained indefinitely to recognise and approve follow-up comments automatically.
If you register on our website (if applicable), we also store the personal information you provide in your user profile. You can see, edit, or delete your information at any time (except for your username). Website administrators can also access and edit this information.
6. What Rights You Have Over Your Data
If you have an account or have left comments on our site, you can request:
- A copy of the personal data we hold about you.
- That we erase any personal data we hold about you.
This excludes data we are obliged to retain for legal, administrative, or security purposes.
7. Where Your Data Is Sent
Visitor comments may be checked through an automated spam detection service (e.g., Akismet or similar).
8. Data Security
We implement appropriate technical and organizational measures to protect your personal data, including SSL encryption and administrative access control.
9. Information Collected Through Sign-Up Forms and Webinars
When you register for events such as webinars or sign up for updates on our website, we may collect personal information you voluntarily provide. This includes:
- Full name
- Email address
- Organisation or affiliation (if applicable)
- Phone number (optional)
- Any other information you choose to submit
How We Use This Information
We collect this data to:
- Register you for live webinars or virtual events
- Send confirmation and personalised emails, reminders, and event-related updates
- Provide access to webinar recordings or related materials
- Follow up with optional feedback surveys
- Add you to our mailing list if you consent to receive future updates
- Inform how we create a future VWD Alliance platform
Consent and Communication
You will only receive ongoing communication (e.g., newsletters or event announcements) if you explicitly opt in during the sign-up process. You may unsubscribe at any time using the link in our emails or by contacting us directly.
Third-Party Platforms
We may host webinars or forms using third-party services such as:
- Google Meet (for live webinars)
- Mailchimp or similar email platforms
- Google Forms or other form tools
These services may collect and process your data according to their own privacy policies. We ensure they are reputable providers that adhere to industry-standard data protection practices.
Data Security
All personal data collected through sign-up or webinar forms is transmitted securely via SSL encryption and stored on protected systems with limited access.
10. Contact Us
If you have questions about this Privacy Policy or would like to exercise your rights, contact us at:
Email: hello@vwdalliance.org