The online Community for people with spinal cord injury, their relatives and friends

Privacy Policy

Effective as of June 2nd, 2017

  • Users of the Community can be sure that they are the only ones to decide how much personal information they want to share.
  • We do not sell or give user data to anyone. We never did and will never do so.
  • We respect the strict Swiss data protection law – and we take it seriously.
  • In case users find a security risk or contents which violate our code of conduct, our Terms and Conditions or this Privacy Policy, they can contact us any time at This email address is being protected from spambots. You need JavaScript enabled to view it.. We will take care of it.

The Community ( supports the interactive communication among users and in addition offers information, which is researched and uploaded by the Community team. With the Community, we have two main aims. Primarily, we would like to offer an online platform that enables interactivity for those who are willing to share their experiences and expertise on the management of spinal cord injury (SCI). Secondly, we would like to provide information to anyone who is interested in spinal cord injury. This Privacy Policy outlines the type of information the Community collects from individuals who have registered to join the Community and how it is used. We reserve the right to modify this policy at any time, and without prior notice, by posting an amended Privacy Policy and Terms and Conditions on this website. We encourage users of the Community to review this policy periodically for any updates. Please note that by continuing to use this website users are agreeing to the terms of the following Privacy Policy.

What kind of information do we collect?

When users navigate the Community, we can collect two types of information.

Personally Identifiable Information

Personally identifiable information (PII) is any information that can be used to identify users. For example, it can include information such as username, date of birth, residence, email address, as well as information relating to their health or other general information. We collect PII when users register with us. Users, however, might decide to remain anonymous and choose a fictitious name when registering.

The only data which are generally accessible by default are the username and the biography. On the Community, users can provide on the field “Biography” the information to share about themselves. There, users of the Community can publish the information to share about themselves. Users might also decide to share other PII through the various services offered by the Community, for example:

  • biographical information, e.g. name, photograph, location, age, personal interests, education
  • health information, e.g. diagnosis of SCI, its causes, consequences, ways of management
  • treatment information, e.g. dosages of medication, side effects, treatment evaluation
  • profession, type and place of work, daily activities, hobbies.

Users are encouraged to share information but should consider that the more information that is entered, the more likely it is that a user could be located or identified.

Non-Personally Identifiable Information

Non-personally identifiable information refers to cookies and IP address (the location of the computer on the internet). A cookie is a small file that is transferred to the hard drive of users’ computers to help us to improve content (e.g. it helps us to figure out which parts of the site are popular and which are less popular, so we may improve these areas). Cookies that we generate contain no PII about users, and we will not combine cookie information with any PII we have collected from users via the Community. Through cookies we collect and store only anonymous information about users’ computers and modes of internet access, including the IP addresses, the date and time users access the Community, how long they stayed on it, how they navigated on our site, and the internet address that brought them to it. However, should users wish to delete or disable the cookies, they can do so by using the respective setting for the browser they are using. Please note that, if users disable cookies, part or all the functionalities of the Community may not work properly anymore, and they may not be able to use the website.

How do we use users’ information?

Generally we will not share or sell users’ personally identifiable information (PII) to any third parties. We might aggregate anonymized data to analyze users’ behavior and to create the best possible tools and functionality for users. In case we would like to use PII for the purpose of scientific research, we will always seek users’ consent to use this information by giving them the option to say ‘no’ (for example by selecting a box or clicking an icon). When we seek users’ consent for using their PII, we will tell them what we want to use it for.

We might periodically ask users to complete short surveys about their experiences with the Community. User participation in these surveys is not required and refusal to do so will not impact on the user’s utilization of the website.

The Community team may use user’s data in the case of emergency or other circumstances that require to directly contact that person. Also, the Community team may disclose user’s data where required by law or to comply with legal processes.

When collecting users’ PII, we follow strict procedures and use security features to prevent unauthorized access. However, no data transmission over the internet is 100% secure. We cannot guarantee the security of users’ data transmitted to our site, and any such transmission is at every user’s own risk.

Use of Content by the Community

The Community is moderated by the Community managers who have access to but do not display users’ PII. The upload of PII on a discussion board means that this information is publicly accessible and can be viewed online and collected by third parties. We are not responsible for the use of information by such third parties. Users of the Community have the option to remain anonymous and publish anonymous posts. They can decide not to share any PII that can be used to identify them. We are not responsible for the privacy of any information usable for identification that users post for the online Community.

Deletion of Information

Users may request that we delete PII collected about users once it is no longer needed for the purpose for which it was collected. To make such a request, please send us an e-mail at This email address is being protected from spambots. You need JavaScript enabled to view it.. It is possible to ask for deletion of the own user account but it is not possible to ask for deletion of published contributions (e.g. in a discussion forum). After deletion of a user account, such contributions will still be publicly accessible under the author name “Former Member”.

No guarantee for authenticity of users’ data

During registration to the Community, we collect the PII of users. However, we cannot guarantee the identity of users. Additionally, we cannot guarantee the authenticity of any data and information that users may provide about themselves or other users.

Questions about the Privacy Policy

If users have questions or comments about our Privacy Policy, they can contact us at the following e-mail address: This email address is being protected from spambots. You need JavaScript enabled to view it..

Changes to the Privacy Policy

We regularly review our Privacy Policy to help us keep it up to date. Therefore, we may update or revise them from time to time. We urge users to review the posted Privacy Policy from time to time for changes made to it.

History of last updates/changes to the Privacy Policy:

  • On June 2nd 2017, original version of the Privacy Policy was published on the site.
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Swiss Paraplegic Research
Guido A. Zäch Strasse 4
6207 Nottwil

This email address is being protected from spambots. You need JavaScript enabled to view it.
T 0800 727 236 (from Switzerland, free of charge)
T +41 41 939 65 55 (from other countries, charges apply)

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