The CJD Support Network
Privacy Policy and use of Cookies

Privacy Policy: Your rights, your information and how we use it

The CJD Support Network (CJDSN) is committed to protecting your personal information.

Our Privacy Policy contains important information about what personal details we collect, what we do with that information, who we may share it with and why and your choices and rights when it comes to the personal information you have given us.

We may need to make changes to our Privacy Policy, so please check our website for updates from time to time. If there are important changes such as changes to where your personal data will be processed; we will contact you to let you know.

This version of our Privacy Policy was last updated on 10 May 2018.

Who we are
We are the CJD Support Network, a UK Charity, registered with the Charities Commission (No. 1097173), providing emotional and practical support for all strains of CJD and for those who are at greater risk of CJD. 

How to contact us
If you have any questions about our Privacy Policy or the information we collect or use about you, please contact us ;

Information we collect and use
Information about you that we collect and use includes:

  • Information about who you are e.g. your name and contact details
  • Information connected to your enquiry, including information you may provide us about other people relevant to your situation e.g. relatives, carers, health professionals
  • Information about your contact with us eg phone calls, emails, letters and meetings
  • Information that is automatically collected e.g. via cookies when you visit our website 
    Our cookie policy can be viewed at any time by clicking ‘Privacy’at the bottom right of our website. Your cookie preference can be changed by clicking ‘Privacy settings’at the top left of our website pages)

Where we collect your information
We may collect your personal information directly from you, from a variety of sources, including:

  • phone conversations with us
  • text messages
  • emails or letters you send to us
  • When you donate to the Network
  • When you register for an event associated with the Network e.g. Family support meeting, fundraiser, marathon, fun-run etc.
  • If you participate in research surveys to help us understand you better and improve our products and services
  • our online services such as websites, social media and mobile device applications (Apps)

 What we collect and use your information for
We take your privacy seriously and we will only ever collect and use information which is personal to you where it is necessary, fair and lawful to do so. We will collect and use your information only where:

  • you have given us your permission [consent] to send you information about services offered by us.
  • it’s necessary in order to provide the service you have requested e.g. if you wish to be placed in contact with other families, health care professionals etc.
  • it’s necessary for us to meet our legal or regulatory obligations e.g. to tell you about changes to Terms and Conditions
  • it’s in the legitimate interests of CJDSN e.g. to deliver appropriate information and guidance; where we need to process your information to better understand you and your needs so we can send you more relevant communications about the services we provide 
  • it’s in the legitimate interests of a third party e.g. sharing information with your healthcare professional (in this situation, we will only ever share your information with your explicit consent)

If you do not wish us to collect and use your personal information in these ways, it may mean that we will be unable to provide you with our service.

Who we may share your information with
We may share your information with third parties for the reasons outlined in 'What we collect and use your information for' (above). However, we will never share your personal information without your explicit consent, except where required to by law.

These third parties include:

  • Other families who may be able to offer support (with your explicit consent)
  • Healthcare professionals (with your explicit consent)
  • Our regulators and Supervisory Authority e.g. the Charities Commission, the Information Commissioner’s Office for the UK (the ICO) (only where required by law)
  • HM Revenue & Customs (HMRC) e.g. for the processing of gift aid on donations (only where required by law)

We will never sell your details to someone else. Whenever we share your personal information, we will do so in line with our obligations to keep your information safe and secure.

Where your information is processed
Your information is processed in the UK and European Economic Area (EEA).

How we protect your information
We take information and system security very seriously and we strive to comply with our obligations at all times. Any personal information which is collected, recorded or used in any way, whether on paper, online or any other media, will have appropriate safeguards applied in line with our data protection obligations.

Your information is protected by controls designed to minimise loss or damage through accident, negligence or deliberate actions. Our employees and contractors also protect sensitive or confidential information when storing or transmitting information electronically and must undertake annual training on this.

Our security controls are aligned to industry standards and good practice; providing a control environment that effectively manages risks to the confidentiality, integrity and availability of your information.

How long we keep your information
We will keep your personal information only where it is necessary to provide you with our services.

We may also keep your information after this period but only where required to meet our legal or regulatory obligations. The length of time we keep your information for these purposes will vary depending on the obligations we are required to meet.

Your individual rights
You have several rights in relation to how CJDSN uses your information. They are:

Right to be informed
You have a right to receive clear and easy to understand information on what personal information we have, why and who we share it with – we do this in our Privacy Policy and privacy notices. 

Right of access
You have the right of access to your personal information. If you wish to receive a copy of the personal information we hold on you, you may make a data subject access request (DSAR).

Right to request that your personal information be corrected
If your personal information is inaccurate or incomplete, you can request that it is corrected.

Right to request erasure
You can ask for your information to be deleted or removed if there is not a compelling reason for CJSN to continue to hold it. We will delete all your personal information, but will then be unable to contact you in the future for any purpose.

Right to restrict processing
You can ask that we block or suppress the processing of your personal information for certain reasons. This means that we are still permitted to keep your information – but only to ensure we don’t use it in the future for those reasons you have restricted.

Right to data portability
You can ask for a copy of your personal information for your own purposes to use across different services.  In certain circumstances, you may move, copy or transfer the personal information we hold to another company in a safe and secure way. For example, onto another support group or to a healthcare professional.

Right to object
You can object to CJSN processing your personal information where: it’s based on our legitimate interests and if we were using it anonymously for scientific/historical research and statistics.

How to make a complaint
We will always strive to collect, use and safeguard your personal information in line with data protection laws. If you do not believe we have handled your information as set out in our Privacy Policy, please visit our website "contact us" page and send us a message with the heading “Complaint”, explaining the reasons for your complaint. You can also register a complaint by email or letter. The "Contact us" menu is to the left of this page near the top of this article, or click here.

We will respond and always do our utmost to make things right.

If you are still unhappy, you can complain to our Supervisory Authority. Their contact details are:

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