1. Who are we
This Privacy notice applies to the processing activities of 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, 1115 HB Duivendrecht, the Netherlands. We are registered with the Trade Register of the Dutch Chamber of Commerce under number 62070665.
In the context of your use of the website (https://ikcc.org/terms-of-use/ the Website) we collect, hold, use and/or otherwise process personal data about you. Based on applicable data protection and privacy law (such as the laws and regulations set out in paragraph 3 below), we qualify as ‘the controller’ with respect to the personal data that we process in that context. This privacy notice covers the data processing activities related to the use of the Website.
Please read this disclaimer carefully. We may change this disclaimer from time to time. The most recent version of this disclaimer can be found on this Website. We recommend you to regularly view the disclaimer on our Website. In case of significant changes to our disclaimer we will expressly bring this to your attention.
All information available on the Website is for the purpose of information only. No rights may be derived from this information. The information on this website should not be taken nor relied upon as medical advice on how to treat your specific manifestation of this condition. Rather, by providing context and understanding, we hope that the information provided on this website will empower the patient to be a better partner in his or her 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.
It is the aim of IKCC to offer a Website which is as up-to-date as possible. However, IKCC cannot guarantee that all information is always complete, correct and up to date. No rights may be derived from the fact that, despite the efforts of IKCC, the information on the Website is incomplete and/or incorrect or (temporarily) unavailable.
Our 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 control or influence the content of this site.
Third party information
Through the database ‘InfoHub’ on the Website we provide a resource of shareable information, graphics and materials about kidney cancer for patient organisations worldwide. We are not responsible for any medical content available in the InfoHub database. Further, the links included within the service may let you leave this site. The linked sites are not under the control of IKCC, and IKCC is not responsible for the contents of any linked site, or any link contained in a linked site, or any changes or updates to such sites. 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 digital newsletter of IKCC is compiled and written with the greatest possible care. However, it may so happen that some published information in the newsletter is incomplete or incorrect. No rights may be derived from the contents of the newsletter and IKCC is not liable for any incorrect, incomplete or lacking information.
Finally, IKCC reserves the right to change, remove or repost any information on the Website without any prior notice. Should this disclaimer change, its most recent version will be posted on this Website.
If you have technical questions about this site, please contact: firstname.lastname@example.org
email@example.com will reach the administrator (Julia Black) of all content on this site. All original medical content is reviewed by members of the IKCC Medical Advisory Board.
3. We know your privacy is important to you
IKCC understands that your privacy is important and that you care about how your personal data is used. We respect and value your privacy and will only collect and use personal data in the manner and for the purposes as described in this document and that is consistent with our obligations and your rights under the applicable legislation and regulations.
This privacy notice is intended to ensure compliance with European and Dutch privacy legislation and regulations, including but not limited to, the General Data Protection Regulation (GDPR), and national implementation laws with respect to the GDPR, such as the Dutch GDPR Implementation Act (Uitvoeringswet Algemene verordening gegevensbescherming, UAVG).
4. 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, for example when you visit our Website which may include information you provide to us by means of contact forms on the Website; and
- By means of cookies when you visit the Website.
5. What personal data do we collect, for what purposes do we use your personal data and on what legal ground?
Information collected via the Website when you sign up for the newsletter:
|First and last name||
Information collected when you register for the IKCC Global Annual Summit:
|First and last name||
|(Work) email address||
|Date of arrival and date of departure date||
|Country of the organisation||
|Website of the organisation||
|Your social media accounts (e.g. Facebook, Twitter, etc)||
Information collected when you register for the hybrid IKCC Global Annual Summit:
|First and last name||
|(Work) email address||
|Country of the organisation||
We base the processing of the personal data mentioned above in connection with the newsletter on the basis of your explicit consent. Also, the processing of photographs taken during the IKCC Global Annual Summit are processed by us on the basis of your explicit consent. We note that you have the right to withdraw your consent at any time. You may do so by contacting us at firstname.lastname@example.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. Where we do not rely upon consent, we base our processing activities on our legitimate interests (such as maintaining our relationship with you, to organize the IKCC Global Annual Summit) and/or to render a certain service to you upon your request.
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.
6. 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. If that is the 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 newsletter), 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, such as your email address, first and last name. Mailchimp will also be able to see and report to us (in an aggregate, non-identifiable manner) how many participants opened the emails sent by Mailchimp on our behalf or clicked on any links in such emails.
7. 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 5). Personal data collected for the IKCC Global Annual Summit which we are not required to keep (such as personal data about food allergies, date of arrival, date of departure etc.) will be deleted after the IKCC Global Annual Summit as soon as possible. Only where we are legally obliged to (for example for tax purposes), or where this is necessary for defending our interests in the context of any disputes, judicial proceedings, we will retain the relevant personal data for longer periods. We are further legally obliged to retain details on financial transactions for 7 years. We will therefore retain details on payments and corresponding bank details for 7 years.
8. 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. All staff and volunteers have entered into confidentiality agreements to protect your information. All personal data is stored on our server using SSL encryption technology.
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.
9. 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 email@example.com. 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.
A cookie is a small text file that is stored on your computer, telephone or other device with which you visit the Website, so that the Website can remember who you are and/or what your preferred language is for the Website. For more information on cookies, please also refer to:
|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.
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.
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 your 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.
11. Links to Third Party Sites
The links included within the Website may let you leave this site. The linked sites are not under the control of IKCC, and IKCC is not responsible for the contents of any linked site, or any link contained in a linked site, or any changes or updates to such sites. 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.