HAEi is committed to protecting your privacy, and that includes protecting any data you share with us. This policy explains what data we collect, what we do with your data, and how we store your data. And finally, what you can do if you have questions.
WHAT DATA DO WE COLLECT, AND WHY?
Through your use of the pages on this website, we may collect data from you. Sometimes the data we collect relates to you or identifies you. In this policy, data that relates to or identifies a natural person is defined as “personal data.” “Data” always includes personal data. Our goal is always to maintain the highest levels of privacy and security with your personal data, in keeping with the General Data Protection Regulation principles. We will only process your data when we consider it fair and lawful to do so.
WE MAY COLLECT THE FOLLOWING DATA FROM YOU:
- Information you provide to us when you complete forms on our website or when you decide to create a profile to use our services. For example, contact forms, opt-in for our newsletter or magazine, sign-ups for events or an account for HAEi Advocacy Academy, or a profile for our hae day :-) activity challenge.
The data we may collect is:
- Category: (Patient/Care Giver, Physician, Nurse, Health Care Professional, Pharma Company, Press/media/others)
Some fields will be mandatory to complete to be able to create a profile. These will be marked with a * on the profile form.
Sometimes the reason for data collection will be obvious, such as when you give us your email address to allow us to contact you. When it is not, we will describe to you at the time of collection the purpose for collecting the data, and if possible, ask for your consent. To the extent possible, we anonymize the data we collect from you.
- Records of your visits to the site, through cookies and otherwise. These records may include traffic data, location information, logs, information about your computer or mobile device such as, if applicable, your IP address, operating system, mobile carrier, or device identifying information.
We do not collect sensitive personal data.
Unless you create an account or profile or are a Youngster who joins our HAEi Youngsters’ Community, we do not intentionally collect personal data from anyone under the age of sixteen (16). If you are under the age of 16, you need to get permission from a parent or legal guardian before providing any personal details
HOW DO WE USE THE DATA WE COLLECT FROM YOU?
We use the data we collect from you to provide HAE-related newsletters or magazines and to respond to your interaction with our contact points.
You can unsubscribe from any email list by clicking the indicated link in the email.
Creating a profile or an account
If you create a profile or account on any of our websites, your personal information/data is stored and used to make it easier for you to access our services when you come back to the website.
For HAEi Advocacy Academy, your account’s personal information/data is used to ensure that some audience-specific courses are accessible to you, where relevant that Member Organization Exclusive Access codes have been appropriately used, and to communicate with you regarding HAEi Advocacy Academy mostly by email. Examples of this communication include topics like: updates on HAEi Advocacy Academy, requests for feedback, availability of new courses, and confirmation emails.
For haeday.org, your profile’s 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 the progress of the activity campaign for hae day :-), and requests for feedback.
We do not use your personal information/data for manual or automatic profiling.
When applicable, we analyze this information to improve our website, improve the products and services we provide, and protect us and you from malicious web activity. We may share this information with third parties. Those third parties and their respective privacy policies are as follows:
HOW LONG DO WE KEEP YOUR DATA?
In general, we keep your data only as long as necessary to provide the service or product you requested.
You can always unsubscribe to the service, and if needed, you can ask us to destroy your data at any time.
WHERE IS YOUR DATA STORED?
Our webserver is located in Germany (website), and our mail services are located in the United States.
HOW DO WE ENSURE YOUR DATA IS SECURE?
We take a number of steps to ensure that data we collect is protected from unauthorized access, alteration, disclosure, or destruction, including the following:
- We regularly review our data collection, storage, and processing practices, including physical and electronic security measures.
- We restrict access to your personal data only to HAEi personnel and those agents and business partners who need access to it in order to deliver HAE products and services.
- All of our employees and business partners are subject to strict confidentiality and nondisclosure obligations, the violation of which may result in termination and/or liability.
- All of our employees receive regular appropriate training, including training in information privacy suitable to their respective fields and disciplines.
DO WE SHARE YOUR DATA?
We do not share your personal data with any third party.
Sometimes we may be required to share your data for specific purposes. These purposes may include:
- In order for us to comply with a legal obligation or to detect, prevent, or otherwise address fraud or crime.
- In order to detect or correct technical or security issues.
- In order to apply or enforce our Terms and Conditions or to protect the rights, property, or safety of us, you, our customers, our business partners, others, or the public.
- In order to maintain continuity of service in the event that we sell or liquidate some or all of our business or assets.
Additionally, our website may contain links to our business partners or other third parties. Please understand that those websites have their own policies, and we do not accept any responsibility or liability for your use of those websites or any products or services available there.
ARE YOU REQUIRED TO SUPPLY US WITH YOUR PERSONAL DATA?
Sometimes we have to have your personal data in order to interact with you. Supplying some personal information is a prerequisite to sign up for an event, ask specific questions, and opt-in for a newsletter or magazine. If you do not provide the requested data in those instances, you will not be able to receive the given service from us.
WHAT RIGHTS DO YOU HAVE CONCERNING YOUR PERSONAL DATA?
You have a right to know if we have any of your personal data and to have access to that data, and you have the right to have any incorrect personal data corrected. If you have given us consent to have or use your data, you have the right to withdraw that consent at any time.
You have the right to lodge a complaint with a supervisory authority. Which authority is appropriate varies depending on your jurisdiction. If you wish to lodge a complaint, we can assist you in determining where the complaint should be lodged.
You may contact us at any time to exercise any of these rights. Understand that sometimes we will have to have your data in order to interact with you, and so exercising some or all of these rights might impact your ability to use our website or our services.
WHAT IF YOU HAVE FURTHER QUESTIONS?
If you have any additional questions about our privacy practices, please contact our data representative Jørn Schultz-Boysen at gro.ieah@noitcetorpatad
We take good care of your data.
HAE International (HAEi)
Vejlevej 16, 1.
HAE International – HAEi
10560 Main Street
Ste. PS40 Fairfax City
United States of America
HAEi reserves the right to alter this policy at any time for any reason without prior notice. You are responsible to keep yourself updated on any such changes that might affect you.
Last updated: February 2022.