Privacy Statement


The World Marrow Donor Association (WMDA) respects everyone’s right to the protection of personal data and we process personal data with care and confidentiality. We only collect personal data that is necessary for our operations, and protect it in the manner required by the nature of the data. Data is only handled by persons who are required to do so by their tasks. Our employees and partners in cooperation are bound by a confidentiality agreement.

The processing of personal data is essential for the WMDA’s operations, and the appropriateness of the processing is important in order to maintain the trust of our members and customers, and indirectly of donors and patients, and the society in general.

Who we are?

The World Marrow Donor Association (WMDA) was founded in 1994 is made up of organisations and individuals who promote global collaboration and best practices for the benefit of stem cell donors and transplant patients.

WMDA is led by the WMDA Board and Committees whose members are all experts in their fields. Day-to-day activities are carried out by our WMDA office, a team of professionals based in Leiden, the Netherlands.

In 2017, WMDA took over the activities of the global donor and cord blood unit database Bone Marrow Donors Worldwide (BMDW), now called Search & Match Service and the NetCord Foundation.

What data is collected about me?

Users of our products and services

We only collect data necessary for communication purposes, invoicing, and user account management of our restricted products and services. The minimal data we collect are the following details:

Email address.

In case of a paid service or product, we in addition collect the following details:
Your position;
Phone number;
Organisation name;
Organisation address;
Invoicing address.

For some of our products, we might collect supplementary data, such as educational background or experience in the field of hematopoietic stem cell transplantation to assess your application for acceptance.

Website visitors

During your visit on one of our websites we also collect log information including your IP address for technical support and data on how you use the websites, so we can personalise and improve the websites.

In addition, when you ask a question through the contact form or any other form on the website, we process your contact details (if submitted by you) and the subject of your message in order to get back to you.


When you have signed-up for a course, we use your name and e-mail address to inform you about the future development of the WMDA education. You can always unsubscribe to the newsletter by using the unsubscribe option in the newsletter.

How is my data obtained?

The data originate directly from the registered persons themselves, or an official representative of the registered person or affiliated organisation. The data is mainly obtained through completion of digital online forms and replenished by data received through email or other communication channels.

Why is my data processed and what is the legal basis?

The General Data Protection Regulation (GDPR) requires organisations to define the legal basis for processing your data.

The majority of WMDA’s data processing is necessary for the performance of a contract with you when you requested access to any of our products or services.

  • Communication related to the purchased product or service;
  • Processing sales transactions or other payments and verifying financial transactions for the purchased products or services;
  • Support, troubleshooting and solving problems with the websites, including instances when we want to improve your user experience.
  • Some of your data might be collected and processed in our own legitimate interest.
  • IP addresses to help diagnose problems, administer our websites, track ad performance, and collect demographic information;
  • Statistical information from google analytics;
  • Finding suitable employees;

Communication to our members with e.g. updates and news to build a strong and loyal membership community.

Our legitimate interest is always balanced against your interests or fundamental rights and freedoms.

Is my data disclosed to parties outside the WMDA? If so, why and where?

Your information is not submitted or transferred to third parties, and is not accessible to parties outside the WMDA, aside from information system suppliers who have access to the systems for technical reasons. We will not share your information with any third parties unless we have your permission or are required by law to do so.

We will never sell or pass on your personal information to third parties for their own marketing purposes with exception of WMDA member organisations that are organising the WMDA meeting (for example the International Donor Registry Conference) or the WMDA annual meeting.

Is my data transferred outside the EU?

The WMDA products, services and applications that contain personal data are run on servers located  within the EU, which means that data is not transferred outside the EU.

How is my data protected?

WMDA has implemented appropriate technical and organisational security measures to protect your data against accidental loss or unlawful processing, including measures with respect to physical and logical (access)security on equipment and systems, firewalls and safe (encrypted) storage of personal data. Your personal data are adequately protected and treated confidentially. Our contracts with the suppliers of information systems make sure they have implemented appropriate technical and organisational security measures with respect to the processing of personal data.

Is my data used for profiling or automated decision-making?

Your data will not be used for profiling or automatic decision-making.

For how long is my data stored?

WMDA retains your personal data for no longer than is necessary for the purposes for which the personal data are collected or processed, unless WMDA is obliged by law to retain your data for longer.

Contact data from previous users of WMDA’s products and services might be kept into the customer management system for future communication on new products or when the user also fulfils additional activities within the WMDA.

The WMDA’s products or services also store log data and back-up data. Log data are kept for six months. Back-up files from the data are stored based on a rotation scheme for a maximum of 1 year.

WMDA retains the data from the submitted contact form for a maximum of 5 years.

How can I review my data and rectify any inaccurate information?

You are always in control of your data that we store. You have:

  • The right to request access to the personal data that is processed by WMDA;
  • The right to obtain the rectification of inaccurate personal data from WMDA;
  • Under circumstances, the right to ask WMDA to erase your personal data (also called the right to be forgotten);
  • Under circumstances, the right to obtain restriction of processing from WMDA;
  • Under circumstances, the right to data portability;
  • In case consent is given, the right to withdraw your consent at any time;
  • The right to file a complaint to the Data Protection authority;
  • Furthermore, under circumstances you have the right to object to the processing of your personal data.

In order to exercise the abovementioned rights, you can submit a request to For more information on your rights, you can also visit the website from the Dutch competent authority at

Changes to this Privacy Statement

We will keep it under review and make updates from time to time. Updates to this Statement will be posted on the WMDA website. If we make any significant changes to the way we treat your personal data, we will make this clear on the WMDA website or by contacting you directly.

How can I ask questions about this Privacy Statement?

If you still have any questions, comments or concerns after reading this Privacy Statement, you can contact us by sending a message to the WMDA office at

World Marrow Donor Association (WMDA)
Schipholweg 57, 1st floor,
2316 ZL Leiden,
The Netherlands

Tel: +31 88 505 7900

Last modified: Wednesday, June 17, 2020, 10:15 PM