Terms, conditions and privacy policy

MARCH 2021

The information, including opinions and recommendations, contained in this website is for educational purposes only. Such information is not intended to be a substitute for professional medical advice, diagnosis or treatment. No one should act upon any information provided in this website without first seeking medical advice from a qualified medical physician. Information derived from the internet or emails, no matter how accurate or relevant are no substitute for competent medical care.

Whilst all reasonable endeavour has been used to ensure accuracy and completeness of the details of the events listed, HAEi organisers of hae day :-) are not responsible for the events themselves and actual details may differ from those on the site. The organisers of hae day :-) accept no responsibility whatsoever for any reliance placed on the contents of the site.

What is haeday.org?

Haeday.org is the website for the annual Hereditary Angioedema (HAE) awareness day, created and operated by HAE International (HAEi).

HAE International (HAEi) is a global non-profit network of patient associations dedicated to raising awareness of hereditary angioedema (HAE) around the world and improving the lives of people with HAE.

What personal information would we like to have from you?

We are aware that you may have concerns about giving us your personal information to enter your activity or create a profile on haeday.org.

This is the personal information/data that we ask you to enter:
Fields with * are mandatory to enter your activity. Your email is also needed to create a profile.

How we use your personal information/data

If you create a profile, your personal information/data is stored and used to make it easier for you to enter activities when you come back to the website.

Your personal information/data is used to ensure that your activities are attributed to you and to communicate with you regarding hae day :-) mostly by email.

Examples of communication from us include topics like:

  • Participation in a certain number of activities/ reaching certain step totals
  • Updates on progress of the activity campaign for hae day :-)

We do not use your personal information/ data for manual or automatic profiling.

Creating a profile

The profile services are intended solely for people who are aged 13 years or older. If you are under the legal age to form a binding contract in your country, you represent that your parent or legal guardian has reviewed and agreed to these Terms on your behalf.

Your data security is our priority

Your personal information/ data are being stored securely at our data processor Cloudways with subcontractor Google Cloud Services. HAEi complies with the European General Data Protection Regulation (EU-GDPR). Only people with direct work and influence with hae day :-) 2021 will have access to your data (or part of your data), and they are instructed how to handle personal data.

The following parties are involved with and handling the profiles for hae day :-) 2021:

  • HAE International (HAEi) – coordination and event management

Your data will not be shared, nor sold, to any third party without your written consent.

We keep your personal data for five (5) calendar months after hae day :-) 2021 (16 May 2021)


To improve your user experience we use cookies. For insights in the traffic on our website we use Google Analytics. Read more about how we use cookies in our cookie policy and impressum.

Uploading an image

When uploading or contributing an image (‘photograph’ ‘photo’ ‘picture’) to haeday.org, you agree to the following terms and conditions. If you do not agree, please DO NOT upload or contribute an image in any way.

Haeday.org and HAEi reserves the right to reject and remove any uploaded Image from display on its website, for any reason, at any time, without prior notice. Images that are rejected or removed will be deleted from haeday.org entirely, with no copies remaining in the haeday.org system.

By uploading an image to haeday.org:

  • You guarantee that you are the legal owner of the copyright of that Image, or have been awarded full and unrestricted rights from the copyright owner, copyright, and have full rights to copy, transmit and display the image in any media, on this website or any other.
  • You guarantee that any people which are clearly identifiable have consented to have their likeness printed or displayed, or that you have full rights to use the Image in this manner and accept full responsibility for such use.
  • You are solely responsible for its content and for any offence, claims or damages that arise from the content of that Image. You should only upload Images that are appropriate and relevant to your activity. You must not upload Images that contain objectionable or potentially offensive content. This includes but is not limited to nudity, violence, and other offensive, illegal or inappropriate images or videos.
  • You give haeday.org and HAEi permission to use the image for any promotional purposes whatsoever, such as using the image in its data feeds to other websites or in our Global Perspectives magazine
  • You agree that haeday.org and HAEi cannot be held responsible for the misuse or abuse of any image you upload to haeday.org

Updates to these terms

Haeday.org and HAEi reserve the right to alter these terms at any time for any reason without prior notice. You are responsible to keep yourself updated on any such changes that might affect you.


We take good care of your data.

Operation Headquarters:
HAE International (HAEi)
Standkaervej 30, 1.
DK-8700 Horsens

Registered address:
HAE International – HAEi
10560 Main Street
Ste. PS40 Fairfax City
VA 22030
United States of America

If you want to reach out to us about data security, please contact our data representative: Jørn Schultz-Boysen – dataprotection@haei.org