Home > Privacy


It is the policy of the International Pompe Association (IPA), as Data Controller, to protect the security and confidentiality of the Personal Data of members, donors, participants, or other third parties (Data Subjects) the IPA engages with, in compliance with the General Data Protection Regulation (EU) 2016/679 (GDPR).

If you become a member of the IPA, make a donation or otherwise provide personal information to the IPA, you expressly consent that your personal information will be processed pursuant to our Privacy Policy.

We advise you to read this Policy and keep a copy for your own reference.

  1. Data Controller
    The organization responsible for processing personal information is: International Pompe Association (IPA)
    Lt. Generaal van Heutzlaan 6, 3743 JN Baarn, The Netherlands
    For any questions about our privacy policy you can contact the IPA to our email info@worldpompe.org.
  2. What information do we collect and for which purpose
    2.1 As part of your membership, the following (personal) data will be processed:
    Contact information:
    a. Your name and the name of the organization
    b. Your full address
    c. Your phone number
    d. Your email address
    e. Your bank details (if paying membership or donator)
    2.2 The IPA will use this information mentioned in sub 2.1 for the following purposes:
    A. your name, address, phone number and email address will be used for contacting you about your membership, how to terminate your membership,  give you the information you asked for and to process the received information from you;
    B. your name, address, phone number  and email address will be used to provide you invitations, information about our services, products , activities or questionnaires;
    C. your name and bank details will be used for payments like membership fee;
    D. the IPA will use your name and email address to send you the periodical  newsletter with information about our activities, services and other interesting information for the members, unless you explicitly inform us that you do not want to receive the newsletter. If you do not want to receive email s from us, or do not want us to share your information, or if you want to withdraw your consent, you can email us to info@worldpompe.org;
    E. The IPA will list your name, the name of your organization, the email address and phone number on the IPA website under the Members section;
    2.3 The IPA can anonymous combine the contact information and use this for research purposes so we can optimize our services. This information will never be reduced to an individual person.
  3. How long your information is kept
    3.1 The IPA keeps your personal information only for as long as required to operate the service in accordance with legal requirements and according rules.  Where your information is not longer required, we will ensure it is disposed of in a secure manner.
  4. Security measures
    4.1 To protect your personal information the IPA took appropriate technical and organizational measures. This way your personal information will be protected against illegal use and against unintentional  loss, destruction or damage.
    4.2 We work with an authorised contractor, who works only in assignment of the IPA. This contractor is obliged to fulfill all the obligations from the Law on protection personal information and this policy.
  5. Your rights to your information
    5.1 You can always request the IPA to show you your personal information, to change it or ask to delete the information.
    5.2 The IPA will deal with your request within a month, unless there are legal reasons to keep the information.
    5.3 When you have a complain about the way the IPA treated your request, you can contact the IPA first and when this is not satisfying you can always contact the Dutch Data Protection Authority at www.autoriteitpersoonsgegevens.nl.
    5.4 For all requests,  complains, questions or remarks about this policy you can contact the IPA at www.worldpompe.org.
  6. Changes to this policy
    6.1 This policy may change from time to time. If we make any significant changes in the way we process your personal information, we will publicise these changes clearly or contact your directly with more information.