This privacy statement is about how Aniridia Europe collects and uses personal information about you.
Who is responsible for treatment?
The board of Aniridia Europe is responsible for ensuring a safe and good processing of personal data in the association. You can contact the board of Aniridia Europe at firstname.lastname@example.org.
What is the purpose of this statement?
We work constantly to give you a customized and good experience of Aniridia Europe. Here are the main purposes we use personal information to:
Provide services such as:
- Send you information about our events and other information from Aniridia Europe’s activities.
- Send you information about other activities and / or information from our partners, research environments and other relevant organizations.
- Understand market trends and needs through statistics, by analyzing data from large groups among Aniridia Europe’s members to improve and further develop our services.
What personal data is processed?
Name, address, telephone number, email address, date of birth, diagnosis, which activities / events you register for.
Where does the information come from?
Information comes directly from the member when he or she registers as a member, registers at an activity/event and otherwise gets in touch about changes to information.
Who has access to information?
All information is mainly available to only Aniridia Europe´s board.
The accountant and auditor have access to membership lists (name, address, e-mail and type of membership), in accordance with laws for performing accounting and auditing work.
Other relevant persons may have access to information, in order to perform an offered service on which the member has registered. This can be name, address, telephone number and e-mail for activities and peer work.
Is it voluntary to provide the information?
It is required that all members state (1) full names. (2) At least one way to be contacted. (Either e-mail address, telephone number or a postal address where letters can be received). (3) determine the type of member. Otherwise, it is voluntary if the member wishes to provide their information. If the member does not wish to provide any information beyond what is mentioned, it is possible to send in an e-mail or call Aniridia Europe’s contact person (contact information at https://www.aniridia.eu/about-us/contact-us/).
Failure to fill in all necessary information can make it difficult for Aniridia Europe to maintain an equally good service for everyone. This is for the reason that Aniridia Europe is dependent on some information about each member, such as being able to send out information or get in touch.
Is the information disclosed to third parties?
Aniridia Europe does not sell personal information to third parties, and we do not exchange or pass on such information to third parties.
Outsiders can only access information:
- When this is necessary to perform certain services. In such cases, strict agreements are entered into to ensure information security, in addition, Aniridia Europe will always decide how the information is to be processed.
- At the request of public authorities in Norway.
- In other matters in accordance with Norwegian law.
Aniridia Europe is responsible for the processing of personal data as described above. We rely on using other companies and organizations to perform services and to provide members with information. This concerns the external management of the accounts / membership fee of Aniridia Europe. The company and/or individual we share personal information with, we have also made a data processor agreement with, which ensures that this information is processed correctly and only used for the purpose we have agreed with the third party.
How is the information deleted and archived?
We do not store personal data anymore and to a greater extent than is necessary to fulfil the purpose of the processing, unless it is required by law, for example through the Accounting Act. We have good routines for deletion and anonymization. You can even request to have information removed from your user profile, by sending an email to email@example.com.
The main rule is that personal information is stored for a maximum of two years. How quickly information is deleted may vary. As long as your account is active, we will take care of your personal data and other information you register with us.
When you cancel your membership and/or subscription, we will remove all relevant information about you, and it will no longer be possible to retrieve it.
Web analytics and cookies
Aniridia Europe also collects and processes deidentified information about visitors to websites for which Aniridia Europe is responsible (https://www.aniridia.eu/). so that we at all times analyze market trends in order to facilitate the best possible functionality and further develop the information offered on the website. This information is obtained from the computer’s browser and may include the IP address, operating system, browser software, screen resolution and sender website and other information in accordance with Norwegian law. In addition to specific information that Aniridia Europe may be required to collect by the Norwegian authorities in periods. Such as for safety reasons.
The collection is carried out by “Cookies” which are small text files that the website asks your browser to store on your computer or mobile device. This allows the website to remember your actions or preferences over time.
Aniridia Europe uses the following cookies:
Statistics and information Cookies that collect how visitors use our websites. We use Google Analytics to collect usage statistics. These cookies, and the data collected, are anonymous and cannot be used to identify you as an individual.
We run our websites on WordPress and thus use extensions of WordPress that have Cookies that also collect information about the use of extensions functions. Especially the expansion Akismet that Aniridia Europe has on its website to fight against “spam” comments and inquiries. We analyze comments and inquiries to stop “spam”. To learn more about what they collect, go to their privacy statement here: https://automattic.com/privacy-notice/
When we conduct user surveys, cookies are also stored that tell if you have asked not to answer or have already responded, so that you do not have to be asked to participate every time you visit our website.
The user must, when commenting on posts and using the “contact us” form, register his or hers e-mail address and name. To enable the board or other relevant trustees in the organization, to answer any questions in a more private manner, and to secure us from spam comments and / or inquiries. As mentioned, all comments and inquiries have been analyzed by the WordPress extension Akismet to prevent “spam” comments and inquiries
What rights does the data subject have, and which country’s legislation applies?
All persons who ask have the right to information about the processing of personal data by Aniridia Europe.
If Aniridia Europe processes personal information about you, you have the right to access your own information. If the personal information is incorrect, incomplete, or it is not possible to process it, you can also ask Aniridia Europe to correct the information.
We do not process and store information about you for longer than necessary for the intended purpose or for what is required under agreements entered into and not beyond the scope of the law. We delete personal information when a user notifies that they no longer wish to use the service.
How is the information secured?
Aniridia Europe has established rules and routines for the protection of personal data and privacy.
If we treat “non-personally identifiable information” combined with “personally identifiable information” (for example, your name combined with geographical location), the entire information will be treated as personally identifiable information. If we collect or disseminate sensitive personal information, we use reputable methods to protect the information.
If we disclose your personal information to a third party, we will ensure that there are arrangements and agreements that secure the information and prevent the third party from using the personal information for purposes other than those agreed.
We will use all reasonable precautions to ensure that our shop stewards, data processors and third parties who have access to information about you have adequate information to ensure that they only process this information together.
Changes to the statement
Aniridia Europe reserves the right to change or update the Privacy Statement. All changes are valid from the time they are posted, and will include information collected from that date as well as existing information stored by Aniridia Europe.