News & Opinion Youth
Powering up the voices of the youth rare disease community
Who we are
Our website address is: https://rareyouthrevolutionmagazine.com.
NRG Collective Ltd adheres to the 1998 Data Protection Act and is GDPR compliant. We aim to be transparent at all times and are committed to keeping you fully informed of your General Data Protection rights.
When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.
If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.
If you leave a comment on our site you may opt in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.
Embedded content from other websites
Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.
Who we share your data with
NRG Collective Ltd is both controller and processor
i. We use third party processors Mailchimp for sending our email campaigns
ii. We use third party processors Paypal and Stripe for processing your payments
iii. we use Sageone accounting software to process purchase and sales invoices.
How long we retain your data
If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognise and approve any follow-up comments automatically instead of holding them in a moderation queue.
For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.
NRG Collective collects data under the lawful category of Consent
We collect personal data on our website or in person only if it is directly provided to us by you via a web form or in writing. We may collect the following information: your name, email address, address, telephone number, profession, job title and whether you identify as a patient or caregiver. We use your contact details to:
send you issues of Rare Revolution Magazine and the Rare Youth Issue as well as other publications that may be produced by us in line with your subscription. You may unsubscribe from this subscription at any time
send you our e-newsletter
notify of changes to our website
inform you of improvements or new publications or services.
We use your profession/patient/caregiver status to assist in our marketing strategy this information is only used anonymously.
We use analytical tools including Google Analytics, Google Adwords, Wix. We use these products to:
understand how our website is used so we can make improvements to the user experience
understand how our readers interact with our publications
inform our marketing and sales strategy
promote our publications
User data is anonymous. To view the privacy policies of these companies, follow the links below.
Third party links and social media
We host Twitter, Facebook, LinkedIn, Instagram, Flickr, Google+ and YouTube buttons on both our websites and digital publications, some of which are our own and some of which are third parties. Please be aware that by clicking these buttons you are being taken through to these sites for which we have no control nor liability.
All confidential information is stored securely. We store only what is essential and accurate information. The transmission of information via the internet or email cannot be made impenetrable. However, we have taken security measures to make your information as secure as we can. We have installed a Secure Socket Layer (SSL) on our website which encrypts all data submitted via our web forms.
Our Google drive is protected by two tier authentication and our database has an extra level of security.
What rights you have over your data
As has always been the case you have the following rights regarding your data:
Individuals may have full access to any information held about themselves that is on our database.
Written permission will be sought from the individual in question prior to passing confidential information on to other people outside the organisation.
Access to confidential information is restricted to those within NRG Collective who have a genuine need to know.
We may share your details with companies outside of NRG Collective Ltd for the purpose of running the business, for example our accountant and accounting software provider, and to comply with legal requirements for example HMRC and to other regulatory bodies to comply with law.
Information gathered about an individual that is no longer required will be destroyed by deleting/ shredding.
Individuals have the right to be forgotten and remove their data from our database.
Individuals have the right to ask for their details to be shared with a third party, this must be done in writing.
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.
Visitor comments may be checked through an automated spam detection service.