Introduction – Privacy and Security Statement

WAPO is committed to protecting and respecting the personal data that we receive and hold. This privacy statement describes why and how we collect and use personal data and provides information about individuals’ rights. It also details what will happen in the event of a security breach and how we will endeavor to minimize such breaches.

It applies to personal data provided to WAPO by individuals. We may use personal data provided to us for the purposes described in this privacy statement or as made clear before collecting personal data.
Personal data is any information relating to an identified or identifiable living person. When collecting and using personal data, our policy is to be transparent about why and how we use and process personal data.
We process personal data for several purposes, and the means of collection, lawful basis of processing, use, disclosure, and retention periods for each purpose are set out in the relevant sections below.

The personal data that is provided to us refers to date ONLY provided directly from the individual concerned.
We take the security of all the data we hold seriously. WAPO will take care of data protection and confidentiality. WAPO regularly reviews the appropriateness of the measures we have taken to ensure we keep the data we hold secure. Administrator roles are regularly reviewed and confidential and personal information is restricted to a need-to-know basis.

All information you provide to us is stored on the secure servers of our vendors. Where we have given you (or where you have chosen) a password which enables you to access certain parts of our website WAPO.ORG, you are responsible for keeping this password confidential. Your account and password are issued to you as an individual, and we ask that you do not share your password with anyone. WAPO takes no responsibility if the security of your personal data is compromised as a result of your unauthorized disclosure of your password to a third party.
As an additional precaution, online forms and payments gateways are further secured by Secure Socket Layers and captcha security.

Unfortunately, the transmission of information via the internet is not and cannot be completely secure. Although we will do our utmost to protect your personal data, we cannot guarantee the security of your data transmitted to our site; any transmission is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorized access.

What data does WAPO collect and store?

Personal Identification Data
When a new user is created, the minimum data collected is as follows by Survey Monkey or Google Forms:

  • First Name
  • Last Name
  • Personal email
  • Organization name
  • Organization address
  • Organization email:
  • Website
  • Facebook / Twitter and other online addresses

WAPO will send informational messages to full members and third parties e.g. speakers or sponsors to WAPO activities, related patient organizations, or otherwise.

Data collected for WAPO communication?

When you sign up to receive communication from WAPO, you must – at a minimum – provide your email address and consent to receive different types of communication.

You may also volunteer to provide additional information, specifically: name, country, organization, stakeholder, and member of national platform, in order for WAPO to provide you with more targeted communication (emails, Summit Report, Newsletter, updates or else).
Data collected from WAPO Webinar
Those wishing to accept an invitation to a WAPO Webinar are asked to provide the following mandatory data: name, email, organization, country & profile. The WebinarNinja tool is used to broadcast the webinar. Participants may receive a follow-up email inviting them to receive information about future webinars and be requested to complete a survey following the webinar. This data is anonymized.

Data collected from our members

We collect personal data of members of the WAPO as part of the administration, management, and promotion of our business activities.
This data could include information about their organization, diseases they support and survey responses.
Data we collect on people who use our services
When people visit our website, data is collected through tracking using Google Analytics. This data is of a generic nature. No personal data is collected apart from as mentioned earlier when an individual registers to receive WAPO communication.

Why do we process personal data?

We process personal data provided by individuals who opt-in to subscribe to by sending them regular updates or webinar invitations via email.
Where data was entered to register for a webinar, that personal data includes name, email, organization, country & profile.
Where data is collected automatically, the data that we may collect includes technical information, including the Internet Protocol (IP) address used to connect an individual’s computer to the Internet, login information, browser type and version, time zone setting, browser plug-in types and versions, operating system, and platform;
Other data about an individual’s visit, including the full Uniform Resource Locators (URL) clickstream to, through and from our site (including date and time); products viewed or searched for; page response times, download errors, length of visits to certain pages, page interaction information (such as scrolling, clicks, and mouse-overs), and methods used to browse away from the page.
Our website uses cookies to distinguish individuals from one another. This helps us to provide a better experience when individuals browse our website and allows us to improve our site.

How long do we hold data for?

We retain the personal data processed by us in a live environment for as long as is considered necessary for the purpose(s) for which it was collected (including as required by applicable law or regulation, typically 6 years).
In addition, personal data may be securely archived with restricted access and other appropriate safeguards where there is a need to continue to retain it.

Sharing personal data

We will only share personal data with others when we are legally required to do so unless you have given us consent to do so.
Personal data held by us may be transferred to:
Third-party organizations that provide applications/functionality, data processing or IT services to us. We use third parties to support us in providing our services and to help provide, run, and manage our internal IT systems. For example, providers of information technology, cloud-based software as service providers, identity management, website hosting and management, data analysis, data back-up, security, and storage services. The servers powering and facilitating that cloud infrastructure are located in secure data centres around the world, and personal data may be stored in any one of them.
Occasionally, we may receive requests from third parties with authority to obtain disclosure of personal data, such as to check that we are complying with applicable law and regulation, to investigate an alleged crime, to establish, exercise or defend legal rights. We will only fulfill requests for personal data where we are permitted to do so in accordance with applicable law or regulation.

Security Breaches

Every effort has been taken to prevent such an occurrence but in the unlikely event of a security breach, the individuals involved will immediately be notified of the extent of the incident and what remedial actions are being taken. The WAPO Board of Directors will also be informed and measures will be taken to ensure that future occurrences are prevented.

Managing Cookies

Manage site cookies permission

It may be that your concerns around cookies relate to so-called “spyware”. Rather than switching off cookies in your browser you may find that anti-spyware software achieves the same objective by automatically deleting cookies considered to be invasive.

Turning Cookies Off

If you prefer to switch cookies off – you can do this by adjusting your browser settings to stop it from accepting cookies. Doing so however will likely limit the functionality of our and a large proportion of the world’s websites, as cookies are a standard part of most modern websites.

Locations of processing

Where possible, personal data resides within the EU territory but may be transferred to, and stored at, a destination outside the European Economic Area (EEA). It may also be processed by staff operating outside the EEA who work for one of our suppliers or members of WAPO or the WAPO Board. We will take all reasonable steps to ensure that your data is treated securely, and consistent with the procedures detailed in this privacy statement.
We have taken steps to ensure all personal data is provided with adequate protection and that all transfers of personal data outside the EU are done lawfully. Where we transfer personal data outside of the EU to a country not determined by the European Commission as providing an adequate level of protection for personal data, the transfers will be under an agreement which covers the EU requirements for the transfer of personal data outside the EU.

Individual’s Rights

Individuals have certain rights over their personal data and data controllers are responsible for fulfilling these rights as follows:

  • Individuals may request access to their personal data held by us as a data controller.
  • Individuals may request us to rectify personal data submitted to us or, where appropriate, contact us via the relevant website registration page or by amending the personal details held on relevant applications with which they registered.
  • Individuals may request that we erase their personal data.
  • Where we process personal data based on consent, individuals may withdraw their consent at any time by contacting us or clicking on the unsubscribe link in an email received from us.
  • Individuals may have other rights to restrict or object to our processing of personal data and the right to data portability.
  • Individuals may request information about, or human intervention into, any automated data processing that we may undertake.

If you wish to exercise any of these rights, please send an email to


We hope that you won’t ever need to, but if you do want to complain about our use of personal data, please send an email with the details of your complaint to We will investigate and respond to any complaints we receive.
You also have the right to lodge a complaint with the data protection regulator for your country.

Data Controller and contact information

If you have any questions about this privacy statement or how and why we process personal data, please contact us at
Changes to our privacy statement

This privacy statement was last updated on February 19, 2019