WaihonaPedia support page

Privacy Policy

Daft: 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 Authentication

If you decide to register through or otherwise grant access to a third party social networking or authentication service that we may make available (“Authentication Service”), such as Facebook, LinkedIn or Google, we will collect certain personal information that you have provided to the Authentication Service (such as your name, email address, and other information you make available via the Authentication Service) and an authentication token from the Authentication Service. The personal information collected from the Authentication Service will be used to register you on our Services and to provide some of the features of our Services. 

You may revoke our access to your account on the Authentication Service at any time by updating the appropriate settings in the account preferences of the respective Authentication Service. 

You understand that certain features of our Services may not be available to you if you choose to remove our access to your account with the Authentication Service.

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.


A cookie is a small text file that is stored on a user’s computer for record-keeping purposes. We use both session ID cookies and/or persistent cookies. We use session cookies to make it easier for you to navigate our site. A session ID cookie expires when you close your browser.

A persistent cookie remains on your hard drive for an extended period of time. You can remove persistent cookies through the settings of your Internet browser. We set a persistent cookie for authentication purposes. Persistent cookies also may enable us to track and target the interests of our users to enhance the experience on our site. Third party websites linked to our Services may also use cookies and may track your activities across websites and over time. We are not responsible for cookies placed by third parties.

If your web browser rejects cookies, you may still use our Services, but your ability to use some areas of our Services may be limited.

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 may anonymize or aggregate data collected through the Services and use and disclose it for any purpose.

Information Sharing & Disclosure

Waihonapedia.org is not in the business of selling your information. The Services are intended to be public, and your profile and other information will be viewable to visitors of the Services.  Your information may also be shared as described in this privacy policy and with your permission.  However, we do not rent, sell, or share personal information about you collected in connection with your use of our Services with other people or entities for their direct marketing purposes, except with your permission.

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.

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.

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 at 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