Privacy Policy



In this Privacy Policy, any reference to “ECPC”, “we”, “us”, “our” refers to the European Cancer Patient Coalition (ECPC), whose registered office is at Rue Montoyer 40, B-1000 Brussels,  Registration number BE0818.999.605. Online you can find us at

For the purposes of the General Data Protection Regulation (GDPR) – and all other laws relating to the use of your data we are the ‘data controller’ of the information you provide to us. This means that we handle the way the information is managed and processed while keeping your personal data secure and only using it for appropriate purposes.

What personal data we collect and why we collect it

Personal Data collected by ECPC

ECPC will treat your data with care and take steps to protect it. You may provide us with the following types of personal data when you interact with us:

  • Identity – first name, last name, gender, date of birth, ID and/or passport details
  • Contact – email address, home address, phone number, social media accounts
  • Financial – bank details
  • Health – medical information, and dietary needs
  • Visitor’s IP address and browser user agent string to help spam detection.

Contact emails and Newsletters

If you write us and subscribe to our newsletter, we will use your information to respond to you, regarding the reason you contacted us and to send you newsletters. We will not share your information with any third party outside of our organization, other than as necessary to fulfil your request, e.g. to send you information.

Unless you ask us not to, we may contact you via email in the future to tell you about our new activities or changes to this privacy policy.

Surveys & Contests

From time-to-time our organisation requests information via surveys or contests. Participation in these surveys or contests is completely voluntary and you may choose whether or not to participate and therefore disclose this information. Information requested may include contact information (such as name and postal address), and demographic information (such as zip code, age level). Contact information will be used to notify the winners and award prizes. Survey information will be used for purposes of monitoring or improving the use and satisfaction of activities and tools offered to our Members and partners.


We use “cookies” on this site. A cookie is a piece of data stored on a site visitor’s hard drive to help us improve your access to our site and identify repeat visitors to our site. Cookies can also enable us to track and target the interests of our users to enhance the experience on our site. Usage of a cookie is in no way linked to any personally identifiable information on our site.

Embedded content from other websites

Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.


We use Google Anaytics, Google Form, Facebook, Twitter, LinkedIn, HootSuite and MailCHimp. These tools provide us with your personal information when you are specifically asked to fill in a form or if you subscribed to our newsletters. We also measure key performs indicators such as views, likes, retweets, comments… We monitor data measured and shared by social platforms, strictly using their privacy policy. We collect and analyse data to better understand which information you are looking for and to adapt our future contents with more relevant information.

Your rights


It is important that the personal information we hold about you is accurate and current. Please keep us informed if your personal information changes by keeping your details up to date.

Your personal information

Under certain circumstances, by law you have the right to:

  • Right to erase – You have the right to ask ECPC to delete or remove Personal Data from our records.
  • Right to transfer – You have the right to have the Personal Data we hold about you transferred to another organisation.
  • Rights of access – You have the right to request a copy of the Personal data that we hold about you.
  • Right of correction – You have the right to correct Personal Data that we hold about you that is inaccurate or incomplete.
  • Right to object – You have the right to object to certain types of processing such as direct marketing
  • Right to restrict – You have the right to restrict the processing of your Personal Data.

If you want to exercise these rights, please contact

This does not include any data we are obliged to keep for administrative, legal, or security purposes.

We may need to request specific information from you to help us confirm your identity for security reasons in order to ensure your right to exercise any of the rights listed above.

You will not have to pay a fee to ECPC to exercise any of the other rights listed above. However, we may charge you a reasonable fee or refuse to comply with your request if it is unfounded, repetitive, or excessive.

ECPC will try and respond to all legitimate requests within four weeks. If it is likely to take longer than four weeks to respond, ECPC will notify you.

How does ECPC use your Personal Data?

We will only use your Personal Data when the applicable laws allow us to.

ECPC uses the information collected from you for purposes including the following:

  • To provide you with products and services, such as our newsletters
  • To process job applications
  • To process payments, invoices, and reimbursements
  • To register for you for events
  • To manage compliance and/or regulatory issues
  • For internal administration and record keeping
  • To notify you of changes to this Privacy Policy
  • To answer your enquiries which may involve contacting you by social media post, e-mail, and/or phone.
  • To administer our digital platforms
  • To verify identity, and to detect and prevent fraud
  • To give you the opportunity to provide us with feedback through surveys

Who does ECPC share your Personal Data with?

We are the sole owners of the information collected on this site. We only have access to/collect information that you voluntarily give us via subscription form, survey, contest, email or other direct contact from you. We will not sell or rent this information to anyone.

We may employ third-party companies and individuals due to the following reasons:

  • To facilitate our activities;
  • To perform activity-related services; or
  • To assist us in analysing how our tools and information are used.

On occasions, ECPC may pass your Personal Data to third party suppliers who provide services to us, such as newsletters, hotels for meetings and the ECPC Annual Congress and travel agents for flight bookings. ECPC requires these parties to agree to process the information based on our instructions and requirements consistent with this Privacy Policy and GDPR. Therefore, they are obligated not to disclose or use the information for any other purpose.

Does ECPC send your Personal Data outside the EU?

ECPC is located within the European Union (EU), however, if there is a time when any of our service providers are based outside the EU, we will make sure that your Personal Data is still treated fairly and lawfully. This will include ensuring we have a legal ground for sending your data outside the EU and putting in place necessary safeguards for such arrangement.

How long does ECPC keep your information?

We only store your information for as long as we actually need it for the purposes it was acquired in the first place. In most cases, this means that we will keep your information for as long as you continue to:

  • Be a member of ECPC
  • Be a partner in a project that ECPC leads
  • Subscribe to ECPC’s newsletter and other publications
  • Show interest in ECPC’s activities and its filed.

After that we will either delete it or anonymise it so it cannot be linked back to you.

What third parties we receive data from

We do not receive data from any third party.

How we protect your data

We take precautions to protect your information. When you submit personal information via the website, your information is protected both online and offline.

We also protect your information offline. Only employees who need the information to perform a specific task are granted access to personally identifiable information. We may store your data on servers provided by third party hosting vendors with whom we have contracted. The computers/servers in which we store personally identifiable information are kept in a secure environment.

Questions to ECPC

If you have any questions about how ECPC hands Personal Data or this Privacy Policy notice, please contact ECPC at

You have the right to make a complaint at any time to the Belgian Data Protection Authority:

How to unsubscribe and opt-out from ECPC communications

To unsubscribe from ECPC newsletters you can click on the “unsubscribe” link at the bottom of the newsletter.

For any other emails, please contact the sender or to opt-out of these communications.

Changes to the ECPC Privacy Policy

ECPC reserves the right to update this Privacy Policy at any time. We may also notify you in other ways from time to time about the processing of your personal information.