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RD-Connect newsletter privacy statement

RD-Connect Coordination Office located at the Newcastle University, is collecting your personal data – name (if provided), email address, and IP address - as you have explicitly subscribed to the RD-Connect newsletter. We will only contact you to provide you with information about RD-Connect and news relevant for the rare disease research field.

You have provided your consent for the RD-Connect Coordination Office 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, noting if you do so, we will be unable to provide you with the RD-Connect newsletter. You can request to be removed from the RD-Connect mailing list by sending your request to or by clicking “Unsubscribe” on the bottom of any newsletter issue. Your data will be stored for the time of duration of the project, until 31st October 2018. Should the RD-Connect newsletter continue beyond that period, we will ask you to confirm that you wish to continue to receive this information: if you don’t or you do not respond, we will delete your personal details within one calendar month.

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

If you would like to discuss the RD-Connect’s use of your personal data further, please contact

Should you like more information about how we manage personal data more generally, including your rights under law, and the contact details of the Newcastle University’s Data Protection Officer, please see their Privacy Notice:

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 April 2018.