Terms of Use, Privacy and Cookie Policy

Who are we?

We are Stichting International Kidney Cancer Coalition (IKCC, we, us). We have our registered office at Gemeente Ouder-Amstel, the Netherlands, and our principal place of business at ‘t Ven 30, 1115HB Duivendrecht, the Netherlands. We are registered with the Trade Register of the Dutch Chamber of Commerce under number 62070665.

The World Kidney Cancer Day website

This World Kidney Cancer Day website (https://worldkidneycancerday.org) (the Website) is managed by IKCC and is protected and managed in the same environment as the IKCC website (https://ikcc.org) and as such is afforded the same level of data protection and security.

All (medical) content on the Website has been reviewed by medical experts. Please note that the content of this Website is not intended as medical advice, a substitute of medical advice, nor are they intended to be used for the diagnosis of a disease. Rather, by providing context and understanding, we hope that the information provided on this Website will empower individuals to be a better partner in their own care and will facilitate constructive conversations between patient and physician. This Website is intended to add to, not replace, conversations between a patient and a physician, as the specific details and the patient’s total health situation need to be considered in making the final decisions about treatment.

The Website may contain links to third party websites and services. These links are provided as a convenience only, and the inclusion of any link does not imply endorsement by IKCC of the site or any association with their operators. The linked sites are not under our control, and we are not responsible or liable for the contents of any linked site, or any link contained in a linked site, or any changes or updates to such sites. Also, we are in no way responsible or liable for the processing of personal data by these third parties. Each of these third parties has its own separate and independent privacy policy. We recommend that you read these third parties’ privacy policies before visiting their websites or using their services.

Also, the Website does not host any form of advertisement. Our funding is received from multiple pharmaceutical companies in equal amounts as disclosed on our Sponsors page. None of these sponsors controls the content of this site.

If you have any questions on the contents of the Website, you may reach out to our administrator of the Website by email: contact@ikcc.org. In case of technical questions about this Website, please contact: contact@ikcc.org

We know your privacy is important to you

In the context of your use of the Website, we collect and process certain personal data. Pursuant to applicable data protection and privacy legislation, we qualify as the controller with respect to the personal data that we process.

We value your right to privacy and strive to protect your personal data in accordance with applicable data protection legislation and more specifically with the General Data Protection Regulation (GDPR) and its national implementing legislation, including the Dutch GDPR Implementation Act (Uitvoeringswet Algemene verordening gegevensbescherming) (together: Data Protection Laws).

Below, we set forth how we collect your personal data, which personal data we collect and for what purposes we may use your personal data and to whom your personal data may be disclosed by us. Further, this policy includes important information regarding your rights with respect to the processing of your personal data. Therefore, we encourage you to read this policy carefully.

Whose personal data do we collect and how do we do so?

In the context of the Website, we may collect personal data relating to visitors of the Website and persons providing us with contact details (“you”, “your”). We will collect information about you in the following ways:

  • directly from you, when you decide to sign up for the webinar on the Website (see paragraph 5 below); and
  • by means of cookies when you visit the Website (see paragraph 8 below).

What personal data do we collect, for what purposes do we use your personal data and on what legal ground?

When you decide to sign up for the webinar on the Website we collect the following information about you for the following purposes:

Personal data: Purposes:
  • To register who participates in the webinar
  • Your name is visible to other participants during the webinar
Email address
  • To register who participates in the webinar
  • To communicate details regarding the webinar
  • To send instructions regarding the webinar
  • To send a follow up email after the webinar
(Where submitted) any question you would like to discuss during the webinar  (optional)
  • When signing up for the webinar, you may submit questions you would like to be discussed during the webinar. This way we want to make the webinar as useful and meaningful as possible.

For the processing of the personal data items listed above and for the purposes listed, we have two legal basis: your explicit consent (by actively providing your contact details to us for the purpose of registering for participating in the webinar) or our legitimate interests (which translate into our objective to be able to send you a follow-up email afterwards). We note that you have the right to withdraw your consent at any time. You may do so by contacting us at contact@ikcc.org. Please note, however, that any withdrawal of your consent only has future effect, which means that we will not undo any processing of your personal data already carried out.  If you want to attend the webinar and register via the Website, it is necessary for you to provide us with your name and email address. You are not required to submit any questions. This is voluntary. The webinar will also be live streamed via Youtube and Facebook. If you opt to attend the webinar via these social media platforms, you will not be required to register via the Website. In that case it is not necessary for you to provide us with your first name and email address. While attending the live stream via Youtube or Facebook, please note that Youtube and Facebook may process personal data of you. We refer to the websites of Youtube and Facebook for their privacy policies.

We do not intend to process any sensitive personal data. Should you include any details that can be considered as sensitive data (for instance related to your health), we will rely upon your consent and the fact that you willingly disclosed such data to us.

With whom do we share your personal data?

The personal data listed above is stored on our behalf by a third-party service provider on secured servers using SSL encryption technologies, located in the United Kingdom. The European Commission considered on 28 June 2021 that the United Kingdom ensures a level of data protection for personal data transferred from the European Union that is essentially equivalent to the one guaranteed by the Data Protection Laws.

The personal data listed above will be accessed and processed by IKCC and by our service providers solely on behalf of IKCC for the purposes mentioned above and will not otherwise be accessed by third parties. However, please note that your data may be accessed by or on behalf of us from countries outside the European Union, with a lower level of data protection than in the European Union. In this case, we will ensure that such international transfer of your personal data takes place in accordance with the Data Protection Laws and, where required we will take appropriate measures, such as entering into the standard contractual clauses as approved by the European Commission.

For the purposes as set out above (such as sending out emails to you when you registered for the webinar), we make use of the services of The Rocket Science Group LLC doing business under the name “Mailchimp” (third party). Hence, Mailchimp will be processing the personal data as set out in paragraph 4. Mailchimp will also be able to see and report to us how many participants opened the emails sent by Mailchimp on our behalf or clicked on any links in such emails.  Finally, we note that for the webinar itself, we make use of the services of Streamyard, Inc.

How long do we retain your personal data?

Your personal data will not be retained for longer than is necessary in relation to the purposes for which we process them (we refer to the purposes as listed above in paragraph 4). Hence, your personal data will generally be deleted after we sent you the follow-up email after the webinar, which we expect to send you within one week after the webinar took place. Only where we are legally obliged to, or where this is necessary for defending our interests in the context of judicial proceedings (e.g. in case of a dispute), we will retain the personal data for longer periods.

How do we protect your personal data?

We will implement the necessary administrative, technical and organisational measures for ensuring a level of security appropriate to the specific risks that we have identified. We protect your personal data against destruction, loss, alteration, unauthorised disclosure of or access to personal data transmitted, stored or otherwise processed. For instance, we will ensure that our staff have access to the personal data listed above on a need-to-know basis only and we adopt a proactive approach to protect your privacy by using a secure connection and encrypting your information to prevent unauthorised access.

Although we will take reasonable steps to protect the information you provide to us, you should appreciate that the Internet itself is not secure and take care about the personal information that you transfer over the internet or by email.

What are your rights and how you can exercise them?

Under certain circumstances, you have the right to:

  • information about and access to your personal data;
  • rectify your personal data;
  • erasure of your personal data (‘right to be forgotten’);
  • restriction of processing of your personal data;
  • object to the processing of your personal data;
  • receive your personal data in a structured, commonly used and machine-readable format and to (have) transmit(ted) your personal data to another organization.

If you would like to exercise any of the above rights or receive a copy of the standard contractual clauses entered into by us (if any), please contact us at contact@ikcc.org. Also, if you are of the opinion that we do not process your personal data in line with the Data Protection Laws, we encourage you to contact us at mentioned email address. Alternatively, you have the right to lodge a complaint with the Dutch Data Protection Authority.


On the Website, we use certain cookies and similar technologies. Some of them are essential to make the Website work, others serve to provide you a better, faster and safer user experience or provide us analytical information on the use of the Website. For these analytical cookies, we rely upon our legitimate interests to gain more insight in how often the Website is used and how we can improve the use of our Website.

Cookies are small pieces of data that are stored on your computer or mobile device via your browser. On the Website, we use the following third-party cookies:

Name of the cookie Type of cookie Purpose of the cookie and what information is collected by the cookie Storage period
_ga Analytics (third party) This cookie is installed by Google Analytics and is used to distinguish unique users. 2 years
_gid Analytics (third party) This cookie is installed by Google Analytics and is used to give us insight in how many visitors visit the Website and how the Website is performing.  It collects your IP-address that is partly masked, , from what webpage you have accesses our Website and what pages on the Website you have visited. 1 day

With respect to our use of Google Analytics on the Website, we note that we have entered into a data processing agreement with Google, your IP address is partly masked, Google will not use your data for advertising purposes and we do not use other Google services in combination with the Google Analytics cookie.

How can you manage / delete these cookies?

All major internet browsers offer the option to manage the cookies that were installed on your computer or mobile device.

In case you do not wish that this Website places cookies on your computer / mobile device, you may limit or delete these easily by adjusting you mobile or browser settings.  In addition, you can set your mobile or browser settings in such a way that you get a notification every time you receive a cookie on your computer or mobile device, so that you can decide whether you wish to accept this cookie or not.

Please note that when you disable certain cookies of which we are making use, the possibility exists that certain parts of our Website will no longer function properly and you will no longer enjoy an optimal user experience.