WaihonaPedia support page

Privacy Policy

April 24, 2017

First of all, we want you to know that waihonapedia.org is a platform for people who choose to share information. We believe in our openness philosophy. Moreover, we believe that openness is the key that will help eachother, for example in creating collective knowledge. Openness and privacy are strongly related to eachother. That's why we share our privacy policy so you can judge the advantages and the risks of being part of this sharing site.

This privacy policy explains what information we collect from and about you, how we use and share that information, and what choices you have with that information. This policy applies to all information that we have about you, and to all of the services provided by us, including our website at www.waihonapedia.org (collectively, our “Services”). Please take the time to familiarize yourself with our policies, and if you have any questions please contact us at wiki@waihonapedia.org. This policy is incorporated into and is subject to our Terms of Use.

Information Collection


In order to create a profile on our Services or submit contributions, you must first complete the registration form and create a user name and password. During your registration, you also provide information, such as your name, email address and gender (just to be able to send you nice personalized alerts). To provide the right set of services we will directly after your registration ask for additional information. This information is used to "approve" your registration and to see if you are a (family-member/caretaker of a) patient or if you are are a volunteer professional motivated to help.

If you sign up to receive newsletters or other communications from us or otherwise contact us, you may provide your name, email address, role or position, country, and information about your interests.

Third Party Verification, Social Login

It is not possible to login to WaihonaPedia via social media such as Facebook, LinkedIn or Google. Our arguments for this decision, you can read in the Blog Social Login.

Profile and Contributions

You may fill out your account profile with additional information, including your bio, photograph, organization, language, and interests; links to your social media pages, websites, or blogs; and community contributions. Community contributions include posting resources to your profile or groups, posting information on forums, and providing reviews of resources other users post. We also collect information about which friends you are following, groups you have joined, and resources you have saved to your library on our Services, this is limited strictly to within your library and our services.

All contributions you make on the site are linked to your user profile and user name. Any member of the site and the general public on the Internet (“the public”) can view your profile and the information stored there (except your password) and all of your published contributions (but not your unpublished contributions). 

Note that we accept two types of "published contributions":

  • Privat to members

    For this type of contributions we will do our best to protect these contributions, but we can not be held responsible if these contributions are printed, screen-scraped by other users (or yourself)and by these means are put on the public internet.

  • Public to the internet

You can choose to keep your email address private, but all users and the public can see your published contributions and that your user name is associated with the contribution. While we may make available certain privacy settings for your profile, we cannot guarantee that information you provide us will not be accessible by third parties.

Log Files

As is true of most websites, we gather certain information automatically and store it in log files. This information includes internet protocol (“IP”) addresses, browser type, internet service provider (“ISP”), referring/exit pages, operating system, date/time stamp, and your use of our Services.

We use this information, which does not identify individual users, to analyze trends, administer the site, track users’ movements around the site, and gather demographic information about our user base as a whole.

We do not link this automatically-collected data to your profile information.


Our policy on cookies

We (need to) use cookies because we can not avoid it!

But having said that; our policy is to use them:

  1. and being very transparent about them,
  2. fully in accordance with guidelines defined by the international consensus GDPR (protecting your privacy).

Our mission statement as a non-profit organization, our desire to be absolutely independent from commercial organizations will guide our use of Cookies.

What is a cookie?

Cookies are files that are placed on your computer by websites that you visit. They are widely used in order to make websites work, or work more efficiently, as well as to provide information to the owners of the site. They are also useful to provide you with more relevant information.
The table below explains the different type of cookies WaihonaPedia is using and why :

Cookie type Purpose
Mandatory CookiesThese cookies come with the software and are needed to use our site. They do not collect any personal information.
Our Preferences cookies These cookies are used to improve your browsing experience on our website, ie: display content in French if you click on the French flag, so then when you come back we remember you prefer the french version of our website. They collect your computer identifier (so they do not help you if you use different machines and store you preferred language)
Analytics cookiesWe work with a service called 'google analytics' that uses cookies to collect anonymous information about how visitors use our site. We use their reports to help us improve the site. We can then better understand the number of visitors to the site, where visitors have come from and the pages they visited. Click here for an overview of privacy at Google .
advertisement information cookies (tracking cookies)  We do not give you these, WE DO NOT USE THESE, because we do not like them and because we do not use advertisments on our website. Having said that, just to complete your education on cookies; these cookies are probably the reason society wants us (and all other internet parties) to be clear if we use them and what information they send to collecting services. Other sites place these cookies to collect information about you so they can use it to provide you with very personal advertisements (like medication you could be interested in because of visits to certain websites). We do not collect money from the providers that make money by using your data. 
Third parties/WebsitesWe ourselves do not place these 'tracking cookies' but some of our participants might want to inform you by placing a link to a informative website. When you click that link you get cookies from that website. They are not ours. To protect you a little bit against leaving our website we mark thes links with a little icon    , it shows you you are leaving our website when you click such a link. Below we have two important third parties for showing video's on WaihonaPedia and what we know about these. 
Social Media: YouTubeSome of our community might embed videos from a YouTube channel using YouTube’s privacy-enhanced mode. This mode may set cookies on your computer once you click on the YouTube video player, but YouTube will not store personally-identifiable cookie information for playbacks of embedded videos using the privacy-enhanced mode. So the cookies will only come when you click 'play'.
Social Media: Vimeo We use Vimeo to present movies to you, the cookies work like youtube. So the cookies will only come when you click 'play'.

Stealing of cookies

Bad people could try to steal your cookies because they are just files. So if you lose your phone or computer or somebody can access your computer because you went for the toilet...
We have protected the cookies we provide by marking them with some information that will make it impossible to use them on another computer or in another location. But guarding your phone or computer will usually give you enough protection against stealing of cookies.

Third parties

When you use tools like Facebook, Google Translate to work with our site these services can place cookies on their behalf. We can not exactly tell you what they do with these cookies and what they collect. Use these tools at your own preferences.
We do promise you that you can use our site without you needing to use these tools.

Questions or Concerns

If you have any questions or concerns regarding privacy at WaihonaPedia, please email wiki@waihonapedia.org. Your privacy is important to us and we will make every effort to resolve your concerns. In order to understand our policy better you might be interested in reading this.

Use of Information

We may use the information we collect for a variety of purposes, including to:

  • Provide, improve, personalize, and promote the Services;
  • Develop new services, features, and functionality;
  • Communicate with you, such as to respond to your comments, questions, and requests; 
  • provide customer service and support; 
  • provide you with information about the Services and donation opportunities, administrative messages, and other news or information about us;
  • Monitor and analyze trends, usage, and activities in connection with the Services; 
  • and Investigate and prevent fraudulent transactions, unauthorized access to the Services, and other illegal activities.

We MUST anonymize and can only then aggregate data collected through the Services and use and disclose it for purposes that benefit the associated communties and only after their permission to do so!

Information Sharing & Disclosure

Waihonapedia.org is not in the business of selling your information. We want to allow you to share your information, this implies that you will personally have to set your sharing-level. Whatever sharing level you choose; it will ONLY be with approved users (community members) of the WaihonaPedia. The only exception is when you collaborate on pages intended for the general public. Then we will use you information required to present the authors of these pages (name, photo and a link to a 'about you' page). When you write about your personal experiences or about your relative and you use photo's or other personal information to enrich the story the respective WaihonaPedia community will be required to ask your personal permission. You can request that is information is anonymized before publication to the general public.

Service Providers

We may share your personal information with companies that process payments or provide services to us in connection with developing, operating and maintaining our Services and our business, including outside vendors. We only authorize such entities to use your personal information in accordance with this privacy policy and for no other purpose than to provide us necessary services. These entities will only be allowed access to your data after signing of a official Service Level Agreement (SLA).

Our Commitment to Our Participants and Donors

We will not sell, share, or trade our participants and/or donor lists containing personal information, including names, email addresses, mailing addresses, and phone numbers, with any other non-affiliated organization for their own purposes, unless donors have given us specific permission to do so. This limitation includes personal information received online or offline by us from or about our donors in connection with requesting and/or processing donations. We will share information with service providers that will use the donors’ information only as necessary to provide their services to us.

Other Users and the Public

Waihonapedia.org is a service dedicated to supporting learning communities. Any comments, resources, content, and information you submit to the public areas of the Services, such as the Guidelines, Questions and Answers (only the public area), Share experience stories (only the public ones), can be read, collected, or used by other users and the public. We are not responsible for the information you choose to submit in these services, share in your profile, share in the resources you contribute, or otherwise disclose to the public areas on the site.

Questionaires and scorecards

Any information you record as a answer to questionnaires or as data recorded in a scorecard is Privat to your account only! We will not allow access of other users or donors or external to this information directly. You will have a option to share with others but this will be only through copies (snapshots) of your data (a print, a file or a special copy).

Sharing with Social Networks

We may allow you to share information with social networking websites, such as Facebook. We do not share your information with them unless you direct us to share it. Their use of the information will be governed by their privacy policies, and you may be able to modify your privacy settings on their websites.

Compliance with Laws and Law Enforcement Requests; Protection of Our Rights

We may disclose your information to a third party if (a) we believe that disclosure is reasonably necessary to comply with any applicable law, regulation, legal process or governmental request, (b) to enforce our agreements, policies and terms of service, (c) to protect the security or integrity of the Services, (d) to protect the property, rights, and safety of us, our users, donors, or the public from harm or illegal activities, (e) to respond to an emergency which we believe in the good faith requires us to disclose information to assist in preventing the death or serious bodily injury of any person, or (f) to investigate and defend ourselves or others against any third-party claims or allegations.

Business Transitions

In the event we go through a business transaction, such as a merger, acquisition by another entity, or bankruptcy, your information will likely be among the assets transferred.
We are obliged by this policy to inform you timely about such a event to allow for the opportunity that you can remove any information you added to our services with the exception of public articles and public experience stories.


We provide reasonable security to protect the information submitted to us, both during transmission and once we receive it. No method of transmission over the Internet, or method of electronic storage, is 100% secure, however. Therefore, we cannot guarantee its absolute security.

If you have any questions about security on our Services, you can send email us at wiki@waihonapedia.org.

Vulnerability and interfaces

We are currently having NO interfaces to third-party systems. This helps us making sure we do not, by accident, leak personal data to these third party. Our current implementation to send information to third parties is that files will become available to you as downloads and that you can send this data to the third party you want to share data with.
It would make the system more easy to use if we could provide more 'easy' sharing with third parties in the future, but then we have to deal with all 'securities' needed to make these interfaces absolutely secure and unbreakable. We will base these interfaces on standardization protocols as prescribed by NICTIZ

Choice or Opt-outs

If your personal information changes, or if you no longer desire to use the Services, you may correct or update your profile by making the change on your profile, and you may delete or deactivate your profile by sending an email to wiki@waihonapedia.org or by contacting us through any method described in the Waihonapedia.org Contact Page or any page of our sponsors; limited to the patient-group sponsors.

You can also choose which groups you would like to join, what members you would like to follow, and what mailings to receive.  When you submit a resource to be included on the site, you can choose to share it publicly or privately, with only yourself or members of the group where you upload it.  If you would like to delete a resource, you can email us at wiki@waihonapedia.org.

You can opt out of email messages and newsletter subscriptions by emailing us at wiki@waihonapedia.org or by using the unsubscribe link included within each email. Even after you opt out from receiving promotional messages from us, you will continue to receive administrative messages from us.

Links to Other Websites

Our Services may contain links to other sites that are not owned or controlled by us. Please be aware that we are not responsible for the privacy practices of such other sites. We encourage you to be aware when you leave our site and to read the privacy statements of each and every website that collects personal information.

Changes in this Privacy Statement

We may change this privacy policy from time to time. If we make any changes, we will notify you by revising the “Effective” date at the top of this privacy policy. In the event that the changes materially alter your rights or obligations hereunder, we will make reasonable efforts to notify you of the change. For example, we may send a message to your email address, if we have one on file, or generate a pop-up or similar notification when you access the Services for the first time after such material changes are made. Your continued use of the Services after the revised policy has become effective indicates that you have read, understood, and agreed to the current version of our privacy policy.

How to Contact Us

We welcome your questions and comments about privacy. Please contact us wiki@waihonapedia.org.

Thank you.

About the website contents


All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: wiki@waihonapedia.org