Registration procedure

You won't be able to start immediately after you have registered because WaihonaPedia has a strict admissions policy. When someone signs up, we check to see if they are really involved in a rare condition. We do this to ensure that your privacy is safeguarded and that you are not harassed by 'vendors' or people with nasty talk.

Your registration with WaihonaPedia is done in 4 steps:


Log in to using the button 'Join' (top right).
Choose how you want to register: via your socialmedia account or via a new account.
Fill in the requested data and confirm your registration by clicking on the button 'Register'.
Team WaihonaPedia will send an email to the email address provided, requesting you to confirm your registration. (No mail received: check your junk mail/spambox).

Confirmation of registration

After you confirmed your registration, you will receive a confirmation of your registration by e-mail. This mail also contains your username. With your username and a password that you can choose yourself, you can log in to WaihonaPedia. You can already read information but do not yet share any information. This is only possible after your registration has been checked.

Checking registration

Together with the patient association, we check whether the person who registers is indeed involved in a person with a rare disorder. We do this to keep out bots, hackers and sellers and to safeguard your privacy. Because we work with volunteers, this can take some time; we ask for your understanding.


Your account at WaihonaPedia is approved. You will receive a welcome email. From now on you can share information on WaihonaPedia.

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: