Privacy Policy
HOW WE RESPECT PRIVACY WHEN WE DEAL WITH PERSONAL INFORMATION COLLECTED BY OUR ORGANISATION
This Privacy Policy applies to information we (SIOPEN Neuroblastoma Research Network) collect about individuals who interact with our organisation. It explains what personal information we collect and how we use it.
If you have any comments or questions about this notice, feel free to contact us via email (SIOPENmanager@siopen.org) or through our contact form. You can also contact us by post at SIOPEN Verein zur Förderung der Neuroblastomforschung, Zimmermannplatz 10, 1090 Vienna, Austria.
1. PERSONAL DATA THAT WE PROCESS
Personal information we would normally collect from you may include: name, email address, postal address, telephone numbers.
In addition, personal information collected by third parties with your consent - may be shared with us and may include: payment information, date of birth, event information.
We may also collect unidentifiable personal information through cookies.
2. COLLECTION OF PERSONAL DATA
We do not collect any personal data from public visitors on our website siopen.org. Data is only collected from registered members on members.siopen.org.
When we collect personal data about you, we do it in the following ways:
Directly from you: when you provide your information through our website, registration forms, surveys, or other direct interactions with our organisation. This includes details such as your name, email address, postal address, telephone numbers, professional information (e.g., clinical specialty, hospital affiliation), and any other information you choose to provide.
Through automated technologies: when you interact with our website, we may automatically collect technical data about your equipment, browsing actions, and patterns. This data is collected using cookies, server logs, and other similar technologies. More information on our use of cookies can be found in our Cookie Policy.
From third parties: with your consent, we may receive personal data about you from third parties. These third parties may include event organizers, professional bodies, or partners who have collected your information and have your consent to share it with us. This may include details such as your participation in events, professional affiliations, and relevant clinical information.
From publicly available sources: we may also collect personal data from publicly accessible sources where this is permitted by law, to help us keep our records accurate and provide better services. This may include information from professional directories, published research, and academic contributions.
3. STORAGE OF PERSONAL DATA
We securely store your data, using third-party service providers, including WildApricot, whose hosting provider is Amazon Web Services (AWS). Such data may be stored in AWS data centers located in the European Economic Area, or other jurisdictions.
To the extent that personal data is transferred outside the European Economic Area, appropriate safeguards are implemented in accordance with applicable data protection laws, including the use of standard contractual clauses or reliance on adequacy decisions.
Further information on WildApricot’s data protection and security measures can be found at:
https://www.wildapricot.com/data-protection
https://www.wildapricot.com/wild-apricot-security
The websites siopen.org and members.siopen.org use Google Analytics, which may process data such as IP addresses and device-related information. Where required, such processing is based on the user’s consent, and appropriate safeguards are implemented for any international data transfers.
4. HOW WE USE YOUR DATA
We will only use your data in an appropriate manner, considering the basis on which that data was collected.
We will use your information to provide you with the services you have requested and reply to enquiries you have sent us.
We will use your personal information to keep a record of our relationship and for internal administrative purposes.
With your consent, we will use your personal information to let you know about the charity’s work and about how you can help us – for example, about volunteering opportunities, fundraising activities and how to donate.
We will also use your personal information for statistical analysis about how we can best meet your needs.
5. WHEN WE SHARE YOUR DATA
We will only pass your data to third parties in the following circumstances:
You have provided your explicit consent for us to pass data to a named third party;
We are using a third party purely for the purposes of processing data on our behalf; or
We are required by law to share your data.
In addition, we will only pass data to third parties outside of the EU where appropriate safeguards are in place as defined by Article 46 of the General Data Protection Regulation.
6. RIGHTS YOU HAVE OVER YOUR DATA
You have a range of rights over your data, which include the following:
Where data processing is based on consent, you may revoke this consent at any time, and we will make it as easy as possible for you to do this (for example by putting ‘unsubscribe’ links at the bottom of all our marketing emails).
You have the right to ask for rectification, restriction and/or deletion of your information.
You have the right of access to your information and to request us to transfer the data we have collected to another organisation, or directly to you.
You have the right to lodge a complaint with the Information Commissioner if you feel your rights have been infringed.
If you would like to access the rights listed above, or any other legal rights you have over your data under current legislation, please get in touch with us.
Please note that relying on some of these rights, such as the right to delete your data, will make it impossible for us to continue to deliver some services to you. However, where possible, we will always try to allow the maximum access to your rights while continuing to deliver as many services to you as possible.
7. RETENTION OF PERSONAL DATA
We retain your personal data only for as long as necessary to fulfil the purposes for which it was collected, including for the purposes of satisfying any legal, accounting, or reporting requirements. To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorized use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.
8. COOKIES & USAGE TRACKING
A cookie is a small file of letters and numbers that is downloaded onto your computer when you visit a website. Cookies are used by many websites and can do a number of things, e.g., remembering your preferences, recording what you have put in your shopping basket, and counting the number of people looking at a website.
Where cookies are used to collect personal data, we list these purposes in section 4 above, along with other personal data that we collect. However, we also use some cookies that do not collect personal information but that do help us collect anonymous information about how people use our website. We use Google Analytics for this purpose. Google Analytics generates statistical and other information about website usage by means of cookies, which are stored on users' computers. The information collected by Google Analytics about usage of our website is not personally identifiable. The data is collected anonymously, stored by Google and used by us to create reports about website usage. Google's privacy policy is available at http://www.google.com/privacypolicy.html.
For more information about cookies, please see http://www.aboutcookies.org/
9. MODIFICATIONS
We may modify this Privacy Policy from time to time and will publish the most current version on our website. If a modification meaningfully reduces your rights, we'll notify people whose personal data we hold and is affected.