Terms of site

Any survey data provided through this website is collected and stored confidentially.

Any personal stories, quotes, or patient voices featured on this website are published with permission and may be removed at any time upon request.

Please read this statement carefully to understand how the International Mast Cell Diseases Awareness Day Committee (“the Committee”, “we”, “our”, “us”) collects, uses and stores your personal information.

What information do we collect?

We may collect personal information such as your name, email address, telephone number, organisation name (where applicable), and message details when you interact with us through this website or our communication channels. Specifically:

  • When you subscribe to our email updates, we collect your name and email address. You can unsubscribe at any time using the link included in our newsletters or by contacting us directly. We use Mailchimp to manage our email list, and your data is securely stored on that platform.

  • When you complete our contact form, we collect your name, email address, organisation (if provided), and message. This information is securely stored in Google Mail.

  • If you message, tag, or comment on our Facebook or Instagram pages, the information you provide is stored on those platforms according to their privacy policies.

We may also receive information about you from third parties, but only if you have given them permission to share it with us.

How do we collect information?

We collect information when you:

  • Subscribe to our newsletter
  • Contact us for information or assistance
  • Register your interest in our activities or campaigns
  • Engage with us on social media
  • Submit your story for sharing
  • Complete a survey (anonymously) 

In all cases, you knowingly provide us with your personal details when you choose to interact with us.

Privacy

We respect your privacy and are committed to protecting your personal information. Any personal data you provide through this website or associated platforms will be collected and used only for the purposes stated, such as sending newsletters, responding to enquiries, or sharing awareness activities.

We do not sell or share your information with third parties. Data is stored securely on trusted platforms (for example, Mailchimp for newsletters and Google Mail for correspondence).

You may request access to, correction of, or deletion of your information at any time by contacting us. We will take reasonable steps to verify your identity before processing such requests.

Confidentiality

Our website may contain links to other websites that are not operated or controlled by the Committee. We are not responsible for the privacy practices, content, or availability of those third-party websites. The inclusion of any external links does not imply endorsement or approval of their content or privacy policies.

Making a complaint

If you have any concerns or complaints about how your personal information has been handled, please contact us.

Please include details of your concern so we can investigate thoroughly. We aim to review and respond within 21 working days, though complex matters may take longer.

If you remain unsatisfied with our response, you may raise your concern with the relevant privacy authority in your country.

Copyright

All content on this website, including text, graphics, logos, images, videos and other materials, is the property of the International Mast Cell Diseases Awareness Day Committee or is used with permission from contributors and partners, unless otherwise stated.

You may share content from this website for personal, educational or awareness purposes, provided proper attribution is given and the material is not altered or used for commercial purposes.

If you believe any material on this site infringes your copyright, please contact us so that we can investigate and, if necessary, remove the material.