Privacy
Last updated: April 2026
We take your privacy very seriously. That is why we are committed to doing everything we can to ensure that the data we collect through FH (genetic) testing is processed and used securely. The GDPR (General Data Protection Regulation) requires us to explain how we do this in this Privacy Statement.
Under the GDPR, the LEEFH Foundation is the “data controller” for your personal data. You can find the most recent information about our foundation on the Chamber of Commerce website here.
What are our privacy and data protection practices?
All our employees sign a confidentiality agreement upon joining the company.
At LEEFH, we have appointed a Data Protection Officer (DPO) who can be reached at: privacy@leefh.nl.
We take great care to secure the systems and files in which personal data is stored. For example, we use multi-factor authentication wherever possible to access our systems and applications. We have internal procedures in place to determine which employees are authorized to access (personal) data, and we keep our employees informed about the risks posed by malware, phishing, and data breaches.
LEEFH must engage suppliers for certain activities. Examples of suppliers include our email and office automation provider, or the party that supplies the application in which we maintain a database of genetic tests and family trees. We ensure that we have a clear contract with all these parties outlining how they handle (personal) data and how they adequately protect it. An up-to-date list of these suppliers can be requested via privacy@leefh.nl.
The information LEEFH needs from you
LEEFH performs various tasks that sometimes require your personal information:
If you request DNA Diagnostics (via our website) , you will receive a test kit. We will then use your personal information (name, contact details, gender, date of birth) to prepare and send the test kit. If you do not use the test kit, LEEFH will delete your data after one (1) year.
You can also use the website to request an umbilical cord kit for your unborn baby. In order to prepare this special version of our test kit, LEEFH needs the name and date of birth of the parent with FH, as well as the parent’s name, address, and email address, and the baby’s expected due date. After this test kit is shipped, LEEFH processes and stores the personal data as described below for the family study.
When undergoing DNA testing (and for the purposes of the FH family study), we ask you to complete and sign a consent form (see page 4 of the application form). In this statement, you give your consent, among other things, for your data to be stored in the LEEFH database. We use this data to inform you about the progress and results of the DNA testing and for any subsequent research that may take place within your family. Furthermore, this data will never be shared with third parties without your explicit and written consent. You can find more information about the study and the application form in the brochure.
The data that LEEFH stores about you constitutes special categories of personal data, which LEEFH is legally permitted to process only with your explicit consent. We follow the national guidelines for family research, which stipulate a retention period of 115 years for your data.
So always read the instructions carefully and take your time. Ask your doctor or family doctor if there’s anything you don’t understand. You can also call or email us (020-6971014 or info@leefh.nl), we will notify you personally. If you wish to withdraw your consent in the future, you may do so. See “Your Rights” below for instructions on how to do this.
Email contact and newsletter
You can also contact us via the LEEFH website. To respond to your message, we need your name, email address, and the content of your message. We store this information and delete it one (1) year after we have responded. If you’d like to stay informed about what LEEFH is doing, you can subscribe to our newsletter by entering your email address. You’ll continue to receive our newsletter until you unsubscribe. To do so, we’ve included an unsubscribe button in every newsletter.
Donate
You can support our work by making a donation to the LEEFH Foundation via the page on our website. We will need your name and address for this donation. You can easily make a payment via Wero (formerly iDeal) using the link on our donation page. We will retain your donation information for seven (7) years to comply with our accounting obligations to the tax authorities.
Diagnostic tools
Our website features FH diagnostic tools that healthcare providers use to help them decide whether or not to order FH testing. Neither LEEFH nor any other party stores any of your personal data when you use these tools.
Your rights
Under the GDPR, you have various rights, such as the right to access, correct, or delete your personal data. Please contact our Data Protection Officer at privacy@leefh.nl. Your request will be processed within 4 weeks at the latest.
If you have any questions or disagree with the way LEEFH handles your privacy, please email the Data Protection Officer at privacy@leefh.nl. If we are unable to resolve the matter together, you can always file a complaint with the Dutch data protection authority via this link.
Viewing "past" results
UMC Amsterdam conducts the DNA testing and, upon request, provides the applicant and/or the treating physician (general practitioner or hospital physician) with the “previous” results. With this form Please provide your consent. You can email the signed document to info@leefh.nl.
