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Myeloma Patients Europe (MPE)  

Privacy Notice


Last updated: 14.09.2020

About this Notice

  • This Privacy Notice (“Notice“) explains how we (as defined below) collect, share and use any information that, alone or in combination with other information, relates to you (“Personal Data“) when you (“you” and “your“):
  • use our website: https://www.mpeurope.org/ (the “Website“), and
  • apply to become involved in activities relating to the work programme of MPE.
  • This Notice also sets out the rights that you have in relation to the Personal Data that we process about you and how you can exercise them.
  • MPE treats compliance with its privacy obligations seriously. This is why we have developed this Notice, which describes the standards that MPE applies to protect Personal Data.
  • For the purposes of this Notice, Myeloma Patients Europe AISBL, with its registered office at Avenue Louise 149/24, 1050 Brussels, Belgium and registered with the Crossroads Bank of Enterprises under number 0842.182.407 (“MPE“, “us“, “we“, or “our” ) acts as the data controller for the Personal Data that is collected via the Website. As a data controller, MPE is responsible for ensuring that the processing of Personal Data complies with applicable data protection law, and specifically with the General Data Protection Regulation.
  • Please take the time to read this Notice carefully. If you have any questions or comments, please contact us by e-mail via info@mpeurope.org.


  1. What Personal Data does MPE collect and why?
    • The types of Personal Data that we may collect about you, and the reasons why we process it, include:
Why we collect it (“purpose”) Personal Data we collect Legal grounds for processing
Sending you our newsletter Email address, First name, Last name Sending you our newsletter (upon your request): When you enter voluntarily your contact details on our website for receiving our newsletter, we rely on our legitimate interest to inform you of our news and activities as an association.

Sending you our newsletter (outside any request from you): In other cases, we will rely on your consent to send you our newsletter.

Enabling you to apply for a job position Email address, First name, Last name, CV, and any personal information you voluntarily provide to us by message online Our legitimate interest in handling job candidates’ applications
Contacting you, upon your request Email address, First name, Last name and any personal information you voluntarily provide to us by message Our legitimate interest in answering your inquiries, questions and comments addressed to us
Enrolling you in MPE patient-focused activities and research Email address, First name, Last name, Country, Status, Areas of interest, Prior experience in these areas Our legitimate interest in answering your inquiries, questions and comments addressed to us
Manage your involvement in activities relating to the work programme of MPE; First name, Last name, Information related to (i) your status of employment in a pharmaceutical company, (ii) consultancy activities, (iii) your strategic advisory role, (iv) your financial interests, (v) the principal investigator and investigator, (vi) your grant or other funding to an organisation/institution, (vii) your close family member interest and (viii) any personal information or facts that you voluntarily provide to us. Our legitimate interest in managing the application for involvement to our work programme and your membership


  • We may also collect certain information automatically from your device. Specifically, the information we collect automatically may include information like your IP address, device type, unique device identification numbers, browser-type, broad geographic location (e.g. country or city-level location) and other technical information. We may also collect information about how your device has interacted with our Website, including the pages accessed and links clicked.
  • Collecting this information enables us to better understand the visitors who come to our Website, where they come from, and what content on our Website is of interest to them.  We use this information for our internal analytics purposes and to improve the quality and relevance of our Website to our visitors.
  • Some of this information may be collected using cookies and similar tracking technology, as explained further in our Cookie Notice which is available here.
  • From time to time, we may receive Personal Data about you from third party sources but only where we have checked that these third parties either have your consent or are otherwise legally permitted or required to disclose your Personal Data to us.
  • The types of Personal Data we collect from third parties include [give examples] and we use this Personal Data we receive from these third parties to [give reasons, e.g. maintain and improve the accuracy of the records we hold about you].
  • In general, we will use the Personal Data we collect from you only for the purposes described in this Notice or for purposes that we explain to you at the time we collect your Personal Data. However, we may also use your Personal Data for other purposes that are not incompatible with the purposes we have disclosed to you (such as archiving purposes in the public interest, scientific or historical research purposes, or statistical purposes) if and where this is permitted by applicable data protection laws.


  1. Who does MPE share your Personal Data with?
    • We may disclose your Personal Data to the following categories of recipients:
      1. to our members for purposes consistent with this Notice. We take precautions to allow access to Personal Data only to those staff members who have a legitimate business need for access and with a contractual prohibition of using the Personal Data for any other purpose.
      2. to our third party vendors, services providers and partners who provide data processing services to us, or who otherwise process Personal Data for purposes that are described in this Notice or notified to you when we collect your Personal Data. This may include disclosures to third party vendors and other service providers we use in connection with the services they provide to us, including to support us in areas such as IT platform management or support services, infrastructure and application services, marketing, data analytics;
      3. to any competent law enforcement body, regulatory, government agency, court or other third party where we believe disclosure is necessary (i) as a matter of applicable law or regulation, (ii) to exercise, establish or defend our legal rights, or (iii) to protect your vital interests or those of any other person;
      4. to our auditors, advisors, legal representatives and similar agents in connection with the advisory services they provide to us for legitimate business purposes and under contractual prohibition of using the Personal Data for any other purpose;
      5. to any other person if you have provided your prior consent to the disclosure.
  2. How we protect your privacy
    • We will process Personal Data in accordance with this Notice, as follows
      1. Fairness: We will process Personal Data fairly. This means that we are transparent about how we process Personal Data and that we will process it in accordance with applicable law.
      2. Lawfulness: We will process Personal Data only on lawful grounds.
      3. Purpose limitation: We will process Personal Data for specified and legitimate purposes, and will not process it in a manner that is incompatible with those purposes, unless permitted by applicable data protection laws.
      4. Data minimization: We will process Personal Data that is adequate, relevant and limited to what is necessary to achieve the purposes for which the data are processed.
      5. Data accuracy: We take appropriate measures to ensure that the Personal Data that we hold about you is accurate, complete and, where necessary, kept up to date. However, it is also your responsibility to ensure that your Personal Data is kept as accurate, complete and current as possible by informing MPE us promptly of any changes or errors. You should notify us of any changes to the Personal Data that we hold about you (e.g. a change of address).
      6. Data security: We use appropriate technical and organisational measures to protect the Personal Data that we collect and process about you. The measures we use are designed to provide a level of security appropriate to the risk of processing your Personal Data.
      7. Limited Retention: We keep your Personal Data in a form that allows us to identify you for as long as necessary to achieve the purposes for which we are processing your data and do not store your data for longer, unless we must comply with applicable laws.

5. Data storage, retention and deletion

  • The Personal Data we collect from you is stored in our servers located in Germany
  • We retain Personal Data we collect from you where we have an ongoing legitimate business need to do so (for example, to provide you with a service you have requested or to comply with applicable legal, tax or accounting requirements).
  • When we have no ongoing legitimate business need to process your Personal Data, we will either delete or anonymise it or, if this is not possible (for example, because your Personal Data has been stored in backup archives), then we will securely store your Personal Data and isolate it from any further processing until deletion is possible.

6. International transfers of data

  • Your Personal Data may be transferred to, and processed in, countries other than the country in which you are resident. These countries may have data protection laws that are different to the laws of your country (and, in some cases, may not be as protective).
  • Specifically, our servers are located in Germany and our members and third party service providers and partners operate around the world. This means that when we collect your Personal Data we may process it in any of these countries.
  • However, we have taken appropriate safeguards to require that your Personal Data will remain protected in accordance with this Notice. These include implementing European Commission’s Standard Contractual Clauses for transfers of Personal Data between our group companies, which require all group companies to protect Personal Data they process from the EEA in accordance with European Union data protection law. Our Standard Contractual Clauses can be provided on request.

7. Your data protection rights

  • You have the following data protection rights:
        1. If you wish to access, correct, update or request deletion of your Personal Data, you can do so at any time by contacting us using the following contact details: info@mpeurope.org.
        2. In addition, in certain circumstances, as stipulated in the applicable data protection legislation, you can object to processing of your Personal Data, ask us to restrict processing of your Personal Data or request portability of your Personal Data. Again, you can exercise these rights by contacting us using the following contact details: info@mpeurope.org.
        3. If we have collected and process your Personal Data with your consent, then you can withdraw your consent at any time. Withdrawing your consent will not affect the lawfulness of any processing we conducted prior to your withdrawal, nor will it affect processing of your Personal Data conducted in reliance on lawful processing grounds other than consent.
        4. You have the right to opt-out of marketing communications we send you at any time. You can exercise this right by clicking on the “unsubscribe” or “opt-out” link in the marketing e-mails we send you.  To opt-out of other forms of marketing (such as postal marketing or telemarketing), then please contact us using the contact details provided above.
        5. If you have a complaint or concern about how we are processing your Personal Data then we will endeavour to address such concern(s). If you feel we have not sufficiently addressed your complaint or concern, you have the right to complain to a data protection authority about our collection and use of your Personal Data. For more information, please contact your local data protection authority. (Contact details for data protection authorities in the European Economic Area, Switzerland and certain non-European countries (including the US and Canada) are available here.)
  • We respond to all requests we receive from individuals wishing to exercise their data protection rights in accordance with applicable data protection laws.
  1. Linking to other websites
    • The Website may contain hyperlinks to websites owned and operated by third parties. These websites have their own privacy policies and we urge you to review them. They will govern the use of Personal Data you submit whilst visiting these websites.
    • We do not accept any responsibility or liability for the privacy practices of such third party websites and your use of such websites is at your own risk.
  1. Updates to this Notice
    • We may update this Notice from time to time in response to changing legal, technical or business developments. When we update our Notice, we will take appropriate measures to inform you, consistent with the significance of the changes we make. We will obtain your consent to any material Notice changes if and where this is required by applicable data protection laws.
    • You can see when this Notice was last updated by checking the “last updated” date displayed at the top of this Notice.