At the The European Rare Diseases Research Alliance (ERDERA), we are aware and committed to the protection of privacy. In compliance with the General Data Protection Regulation (GDPR), please find next detailed information on our practices in connection with the information that we collect, use and disclose through activities that link to our services and the choices you can make about the way your information is collected and used.
By providing Personal Information to us, you agree to the terms and conditions of this Privacy Policy.
Who is responsible for your personal data?
The National Institute of Health and Medical Research (INSERM) is responsible for your personal data. Our registered address is at 101 Rue de Tolbiac, 75654 , Paris CEDEX 13, France.
We are the data controller of the data which we collect from you, and as such we control the ways your personal data are collected and the purposes for which your personal data are used.
Personal data we collect about you
Your privacy comes first, and we aim at the highest standard for data privacy introduced by GDPR. We may collect, process and use your personal data either through our website (when you request information form us or when you register/sign up for our newsletter), mailings or through personal contacts and business cards.
We only collect basic personal data about you which does not include any special types of information or sensitive data. Specifically, types of personal information we collect the following types of Personal Information, includes, but is not limited to:
- Information about user visit and use of this website (this includes IP Address);
- Personal Data freely provided by the user -this includes name, job function, email address, phone number and any other details specifically asked in registration forms or registration for newsletters.
- Other personal or sensitive information related to spontaneous forwarding of personal document (this includes Curriculum Vitae).
Why we need your data and what we do with your data?
We can only collect and use your personal data if we have a proper reason for doing so. According to the law, we can only use your data for one or more of these reasons:
- To respond to user’s inquiries and fulfil requests (newsletter, questions and comments). User’s email address may be added to the mailing list and user may receive email messages containing information about news or events;
- To re-contact the user if ERDERA needs to do so (voluntary submission of personal document i.e. CV);
- To give the access to ERDERA reserved area(s).
In summary, we need to know your basic personal data in order to provide you with the information you request from us, or to provide you with on-going organisational, scientific activities and events updates related to our project and the services we provide. For this purpose, we process personal data based on your consent.
We collect and process personal information needed to carry out any of our obligations arising from any contracts between you and us, on the legal basis of performance of a contract.
Sharing your data
ERDERA does not share personally identifiable information with unrelated Third Parties, which are not covered by this Privacy Policy without user’s prior permission, except to the extent reasonably necessary to:
- Correct technical problems and malfunctions.
- Protect the security and integrity of our website.
- Protect our rights, interests and property and the rights, interests and property of others.
- Comply with laws or to respond to judicial process.
- Provide information to law enforcement agencies or for an investigation of a matter as applicable, or otherwise as required or permitted by law.
As far as these third parties have access to personal data in order to execute these processing activities, we have taken required organisational and contractual measures to ensure that your personal data is processed exclusively for the purposes mentioned above.
Where ERDERA processes the Data
The Data is processed at ERDERA operating offices and in any other places where the parties involved with the processing are located. For further information, please contact us at administration@ejprarediseases.org
How long we keep your data
We keep your data only for as long as we need it. How long we need data depends on what we are using it for, whether that is to provide services to you, for our own legitimate interests (described above) or so that we can comply with the law.
Personal data we collect from you, in order to provide our services, will be kept for maximum 5 years before being deleted. We will actively review the information we hold and when there is no legal or business need for us to hold it, we will delete it securely. Your personal information we use for the newsletter purposes will be kept with us until you notify us that you no longer wish to receive this information. If you have previously opted-in to receiving emails from us, you can opt out by clicking on the unsubscribe link included in all newsletter emails.
What are your rights
Under GDPR you are entitled to know whether your Personal Data has been stored and to
see copies of all personal data held by us and to amend, correct, delete or export such data. You can also limit, restrict or object to the processing of your data. If at any point you want to view your data, or exercise any of the above-described rights, you can make a request to:
INSERM
101 Rue de Tolbiac, 75654 , Paris CEDEX 13, Franceor by e-mail at dataprotection@erdera.org.
When you get in touch, we will come back to you as soon as possible and within a maximum of one month. We may also ask you to verify your identity before we provide any information to you.
Complaints
If you wish to raise a complaint on how we have handled your personal data, you can contact us to have the matter investigated at dataprotection@erdera.org.
If you are not satisfied with our response or believe we are processing your personal data not in accordance with the law, you have the right to lodge a complaint with the supervisory authority which is responsible for the protection of personal data in the country where you live or work, or in which you think a breach of data protection laws might have taken place.
Use of cookies
The ERDERA website is using cookies. You can easily accept or reject the cookies on ERDERA site by choosing one of the following: I accept cookies/ I reject cookies.
What are cookies?
Cookies are short text files placed on your device through the web browser you use. They collect standard information such as the browser type, browser language, your Internet Protocol (IP) address and your interaction with the website. This information is anonymous. In practice, the information gathered is not capable of directly identifying you or tracking your web-browsing activities outside the domain of ERDERA. Also, cookies are not able of infecting your device with viruses or installing unwanted or security-threatening software.
How do we use cookies?
Cookies assist us in improving your experience and interaction with our website. The information gathered enables the website to remember your actions and preferences (such as language, font size and other display preferences) for a period, so you don’t have to keep re-entering them whenever you come back to the site or browse from one page to another.
The data, when collected, is automatically transferred to Google Analytics. Google Analytics performs web analysis and helps us monitor the behaviour of visitors and how they engage with our services or applications. By visiting and using our applications on our website, you consent to the further processing of the data created and recorded by Google Analytics. To receive more insights about how you can control the information collected by Google you can visit www.google.com/policies/privacy/partners or any other link that Google may periodically provide.
How long cookies persist on your browser?
The period that cookies remain on your device may vary depending on their type. Transient cookies (including session cookies storing the session-IDs and offering the functionality of recognising your device when returning to the website) are automatically removed when you exit your web browser. Persistent cookies are usually not automatically removed when you exit your web browser but after a definite period that may vary depending on their type. Persistent cookies can always be manually removed from your web browser.
How do I control/reject cookies?
You can control and/or delete cookies by deleting all cookies that are already on your computer or disabling the use of cookies from your browsing application for this website and others. In that case, please be aware that possibly you may not be able to access the same functionalities for this website.
Links to other websites
The ERDERA website contains links to other websites. When you follow the links to such other websites from here, we advise you to be aware of and read their privacy policy. ERDERA is not responsible for the privacy practices of such other websites.
Embedded content from other websites
In some places, content from other websites is embedded in the ERDERA website (i.e. You Tube videos). Embedded content from other websites behaves in exactly the same way as if the visitor has visited the other website so you may wish to consult the policies of these third-party websites for information regarding their use of cookies.
Changes to our Privacy Policy
From time to time, we may update our Privacy Policy. If we make any substantial changes, these will be posted on our website so please check our Privacy Policy on a regular basis.
