Persmission to share experiences and/or questions
WaihonaPedia is meant to learn more by sharing experiences, questions and information with each other and eventually to know meer about the rare diseases. However, we think it is important that you make the choice to share. That is why the default setting is NOT to share your information with others.
If you WILL share information with others, so that others can read your experience story and/or question (and give their reaction), you must actively give permission for this. If you don't, you can write a story of experience in a theme room, but only you can read it, not others. With this we also comply with the GDPR law (Protecting your Privacy).
Set your permission
- Click on the link of your account (picture of yourself, otherwise an icon with a face).
- Choose the section Community information.
- Click on the pencil to edit the information
- Set YES at 'permission to show to other families'.
- Set YES at 'permission for others to contact me (us)'.
- Click on the 'Save & View' button
What does this mean for the questions I want to keep private?
Because we store questions in your private area, only our experts who are allowed to answer your question will receive a link to the questions you have asked. Note: in a theme room you ask a question to share, all participants will receive a link. If you ask the question via the Dashboard, only experts appointed by your community will receive the link.
