RD-Connect privacy statement

This page explains when and why we collect personal data, how we use it and how we keep it secure.

Newsletter

When you sign up to the RD-Connect newsletter via the website or an email link, RD-Connect collects your personal data – your email address, name (if provided), and IP address. We will only use this information to provide you with updates about RD-Connect and news relevant for the rare disease research field.

By signing up, you provide your consent for RD-Connect to process your personal data for the purposes detailed above. You have the right to request that we delete this personal data at any time. If you do this, we won’t be able to send you the RD-Connect newsletter any more. You can request to be removed from the RD-Connect mailing list by writing to newsletter@rd-connect.eu or by clicking “Unsubscribe” at the bottom of any newsletter issue.

We will retain your information for as long as your subscription is active. We won’t share your personal data with anyone outside RD-Connect, unless required to by law. Your personal data will be stored securely within the European Economic Area.

If you would like to discuss RD-Connect’s use of your personal data further, please contact newsletter@rd-connect.eu.

 

Website

By using our website, you’re agreeing to be bound by our policy.

This website uses cookies to collect statistical data about your browsing actions and patterns. These do not identify you as an individual. It is possible to switch cookies off by setting your browser preferences.

Like many other websites, this website uses Google Analytics to compile aggregate statistics such as the number of visitors and page views, as required for our reporting to the European Commission. No personally identifying data is included in this type of reporting. All of our activity falls within the bounds of the Google Analytics Terms of Service.

When you visit our website, information collected includes your IP address and information regarding what pages are accessed and when. This information is only processed in a way which does not identify anyone. We do not make, and do not allow Google to make, any attempt to find out the identities of those visiting our website. If you sign up to our newsletter, the personal information we collect might include your name and email address.

This website is hosted, maintained and developed by staff at RD-Connect based at Newcastle University, UK and at the Centro Nacional de Análisis Genómico, Spain. We won’t share your personal data with third parties, unless required to by law.

To ensure all information sent between your web browser and our web server is secure, we have a SSL certificate in place for this website.

If you would like to discuss the RD-Connect website’s use of your personal data further, please contact info@rd-connect.eu.

 

RD-Connect Community

When you register to become a member of the RD-Connect Community via the registration form, RD-Connect collects your personal data – your name; email address; name, address and phone of your organisation and information about the character of your engagement in the rare disease field (e.g. are you a researcher, patient advocate, policy maker etc.).

If your application is accepted, we will store this information and only use it to provide you with updates about RD-Connect and information relevant for the members of the RD-Connect Community. Should your application be unsuccessful, we will remove your data from our database within one month from the moment you receive our rejection letter.

If you have provided your consent, we will list you as a member of the Community on our website. In a separate email, we will request you to provide us with information that you agree to be displayed, including your or your organisation’s name, a photograph, contact data and description of your engagement in the rare disease field and your role in the RD-Connect Community.

By registering and accepting your membership in the RD-Connect Community, you provide your consent for RD-Connect to process your personal data for the purposes detailed above. You have the right to request that we delete this personal data at any time. To do this or ask questions regarding RD-Connect’s use of your personal data please contact us at info@rd-connect.eu.

We will retain your information for as long as your are a member. Should you end your membership, we will remove your data from our database and from our website within one month.

We won’t share your personal data with anyone outside of the RD-Connect Community, unless required to by law. Your personal data will be stored securely within the European Economic Area.

 

Webinars

When you sign up to a RD-Connect webinar via the website, RD-Connect information about your email address. We will only use this information to provide you with updates regarding the webinar you signed up for.

By signing up, you provide your consent for RD-Connect to process your personal data for the purposes detailed above. You have the right to request that we delete this personal data at any time. If you do this, we won’t be able to send you the details on the webinar. You can request to be removed from the RD-Connect mailing list by writing to info@rd-connect.eu.

We will retain your information for as long as necessary - usually for few weeks after the webinar, until we can send you links to the slides or recording of the webinar. After that, the data you provided at registration will be deleted. We won’t share your personal data with anyone outside RD-Connect, unless required to by law. Your personal data will be stored securely within the European Economic Area.

If you would like to discuss RD-Connect’s use of your personal data further, please contact info@rd-connect.eu.

 

We take great care with any information we receive from you and are constantly looking at ways we can improve what we do. Therefore, we keep this Policy under regular review. This Policy was last updated – 30th August 2018.

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