In handling your information:
- We will ensure your data is protected and your privacy is kept
- We will only collect and process your data when necessary
- We will not sell, let, or in any way distribute or, make public your personal information
- We will never spam you
MPGN/DDD Support Group processes Personal Data as a Controller, as defined in the Directive and the GDPR.
If you have any questions or concerns, you can email us at firstname.lastname@example.org.
Collecting Personal Information
MPGN/DDD Support Group may collect and use the following kinds of personal information:
- Personal details and contact information
- Demographic Information, such as postcode, preferences and interests
- Information about your use of this website (including cookies)
- Your website interaction information, such as anonymous IP Address, geological location, device and operating system, internet browser type and version, URLs with regards to how you came to this website, your activity on this website and where you exit to
- Information that you provide for completing a web form or mailing list subscription on the website
- Information about transactions carried out over this website
- “Cookies,” which enables the website to remember your information if you return to the site, such as to keep you logged in or to remember your login credentials if you return to the site
- And any other information that you send to the charity
Using Personal Information
MPGN/DDD Support Group may use your personal information:
- To provide or supply information to you
- To contact you to collect data for use in research into MPGN, DDD, C3G and similar diseases
- For internal record keeping and accounting
- For the improvement of our products/services
- For the transmission by email of promotional materials that may be of interest to you
- To contact you for market research purposes which may be done using email, telephone, fax or mail. Such information may be used to customise or update the website
- To personalise the website for you
- To enable your access to and use of the website services
We may collect data about patient conditions from our members to further the research into Patient Information on Membranoproliferative Glomerulonephritis (MPGN), Dense Deposit Disease (DDD) and C3G or similar diseases. We follow the amendment outlined by Unique and Genetic Alliance UK. For more information please visit http://www.geneticalliance.org.uk.
Google Analytics is set to collect data anonymously, with the IP anonymisation configuration setting active and will not record the full IP address.
Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google.
MPGN/DDD Support Group use MailChimp to manage our newsletter and bulk member communications. We will store some of your information, including your email address, IP address and certain information about the email links you click within the emails we send you, on a Mailchimp server.
We will keep a record of consent for marketing communications. We may email existing members infrequently on the basis of the legitimate interests with non-marketing and essential communications.
There’s no third-party tracking in messages we send through MailChimp besides their own analytics. Neither we, nor Mailchimp, will ever sell your email address or share it with any other party, unless we are legally compelled to do so.
Software and Third-parties
MPGN/DDD Support Group will use software and trusted third-parties to fulfil our contractual obligations to you in the performance of our services and completing transactions. By requesting information or delivery of a service and product, we process your data under the lawful basis of contract.
By registering with us or requesting a service, you understand and agree that personal information you provide may be held on:
- Gsuite for Business
- Virgin Money
MPGN/DDD Support Group does not sell or rent your personal data to marketers or unaffiliated third parties. We only share your personal data with the following trusted third parties:
- Realising Designs Limited
MPGN/DDD Support Group will ensure they have contracts with them that confirm your data will be processed following GDPR regulations.
MPGN/DDD Support Group may disclose your personal information to the extent that it is required to do so by law, in connection with any legal proceedings or prospective legal proceedings, and in order to establish, exercise or defend its legal rights.
In the future, we may sell, buy, merge, or partner with other organisations or businesses. In such transactions, user information may be among the transferred assets, and we will notify you in advance of such transfer.
Securing your data
MPGN/DDD Support Group has a Data Governance Policy in operation and will take reasonable technical and organisational precautions to prevent the loss, misuse or alteration of your personal information.
MPGN/DDD Support Group will store all the personal information you provide on its secure servers. We will never provide access to our databases to a non-trusted third party.
Under the GDPR rulings, we would inform our users within 72 hours if any breach of security occurs that might compromise your data.
How you can restrict or access your Personal Data
You may choose to restrict the collection or use of your personal information in the following ways:
- you may continue to be part of our mailing lists whilst at the same time not providing any data for medical research
- we would not use your data for medical research unless you have specifically given your consent for this
If you have previously agreed to us using your personal information for direct marketing purposes or medical research, you may change your mind at any time by:
- writing to Steve Richardson C/O MPGN/DDD Support Group, 27 Jasmine Close, Biggleswade, Bedfordshire, SG18 8SW
- emailing us at email@example.com
- unsubscribing via the unsubscribe link on a marketing email
You may request details of personal information which we hold about you, by applying in writing to Steve Richardson C/O MPGN/DDD Support Group, 27 Jasmine Close, Biggleswade, Bedfordshire, SG18 8SW or email us at firstname.lastname@example.org.
We will supply this information within 30 days. If any data is incorrect we we will correct it as soon as we receive appropriate notice or evidence from you in writing.
The right to be forgotten
We will retain your personal information only for as long as necessary, whilst retaining legal requirements for maintaining financial records.
You have the right to instruct us to delete all the personal information held. Should you wish to instruct us to delete please do so in writing to Steve Richardson C/O MPGN/DDD Support Group, 27 Jasmine Close, Biggleswade, Bedfordshire, SG18 8SW or by email to email@example.com
Any data no longer required will be deleted or destroyed securely and confidentially.
The right of rectification
We will take all reasonable steps to ensure your personal information is current and accurate. If inaccurate or incomplete data is identified, we will takes steps to correct the data, or remove securely and confidentially.
You have the right to instruct us to remove incomplete personal data held. Should you wish to request incomplete data removal, please do so in writing to Steve Richardson C/O MPGN/DDD Support Group, 27 Jasmine Close, Biggleswade, Bedfordshire, SG18 8SW or by email to firstname.lastname@example.org.
What is a ‘cookie’? When you enter a site, your computer will automatically be issued with a cookie. Cookies are text files that identify your computer to our server. Cookies in themselves do not contain any personal identifying information about a visitor or their location. They just identify the computer used. Many sites do this whenever a user visits their site in order to track traffic flows and patterns of behaviour of site visitors.
You can see a schedule of the cookies we use in Schedule A.
Social Media Policy & Usage
We adopt a Social Media Policy to ensure our organisation and our volunteer staff conduct themselves accordingly online. While we may have official profiles on social media platforms users are advised to verify authenticity of such profiles before engaging with, or sharing information with such profiles. We will never ask for user passwords or personal details on social media platforms. Users are advised to conduct themselves appropriately when engaging with us on social media.
There may be instances where our website features social sharing buttons, which help share web content directly from web pages to the respective social media platforms. You use social sharing buttons at your own discretion and accept that doing so may publish content to your social media profile feed or page.
Use of Services by Minors
The Services are not directed to individuals under the age of eighteen (18), and we request that they not provide Personal Data through the Services.
Changes to this policy
Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.
Contact MPGN/DDD Support Group
You can contact us at any point to:
- Request access to information that MPGN/DDD Support Group has about you
- Correct any information that MPGN/DDD Support Group has about you
- Request the deletion of information that MPGN/DDD Support Group has about you
Should you feel there may be a problem in how your data has been handled, you should contact MPGN/DDD Support Group by email to email@example.com. Should you still not be satisfied you have a right to complain to the Information Commissioner’s Office (ico.org.uk).
Schedule A – Cookies
|Cookie Name||Expiration Time||Description|
|_ga||2 years||Used to distinguish users|
|_gid||24 hours||Used to distinguish users|
|_gat||1 minute||Used to throttle request rate. If Google Analytics is deployed via Google Tag Manager, this cookie will be named _dc_gtm_<property-id>|
|_dc_gtm_<property-id>||90 days||Contains campaign related information for the user. If you have linked your Google Analytics and AdWords accounts, AdWords website conversion tags will read this cookie unless you opt-out.|