Privacy Policy for CJD Support Network
CJD Support (“us”, “we”, or “our”) operates the https://cjdsupport.co.uk website (the “Service”).
This page outlines our policies regarding the collection, use, disclosure, and retention of Personal Information when you use our Service. We are committed to ensuring that your privacy is protected and that your information is used only in accordance with this Privacy Policy.
Information Collection and Use
When you use our Service, we may request certain personally identifiable information that can be used to contact or identify you. This information (“Personal Information”) may include, but is not limited to:
- Name
- Email address
- Telephone number
- Address
- Connection to CJD/prion disease (e.g., personal/professional, sCJD/genetic prion disease/acquired prion disease, etc.)
Helpline Privacy Policy
How We Use Your Data
Personal details of individuals supported via our helpline (inbound or outbound calls) will only be used to provide the information or services requested by them.
Type of Personal Information We Collect
We collect your name, telephone number and/or email address, and details you voluntarily share with us regarding the nature of your call or email. This may include medical information and information about family members.
How We Obtain Your Personal Information and Why
Most personal information processed by us is directly provided by you when you seek information and support concerning your child, yourself, or a family member’s growth or growth condition.
The information provided helps us deliver tailored support and appropriate resources. To effectively handle your query or concern, some information you provide may be shared with members of the CJD Support Network Management Committee, specialist clinicians, or local consulting clinicians. We will always seek your explicit consent before sharing your information under these circumstances.
Membership Fees and Contact Information
Please be informed that should there be any changes to membership fees, we will promptly notify all existing members, provided we have accurate and up-to-date contact information on file. Please note that any payments received for non-full memberships will be considered donations.
All personal information is handled in accordance with our privacy policy and data retention policy. Should you wish to update any aspect of your membership, please do not hesitate to contact us. We also offer the option to be removed from our membership mailing list upon request. To do so, please email us at [email protected].
Please be aware that we use Mailchimp for storing personal information. You can review their privacy policy here: https://mailchimp.com/legal/.
Data Retention
We retain your Personal Information only for as long as is necessary to fulfil the purposes for which it was collected, including satisfying any legal, accounting, or reporting requirements. Retention periods vary depending on the nature of the data and the purpose for collection. Specifically:
- Membership information is retained for the duration of your membership and for a reasonable period thereafter, as required by law or as necessary to address queries or disputes.
- Information obtained via telephone or email, including helpline interactions, is securely retained for a maximum period of 12 months.
- Log Data and cookies are retained as needed to support and improve the Service.
Once your Personal Information is no longer necessary for these purposes, we will securely delete or anonymise it.
Log Data
We collect information that your browser sends whenever you visit our Service (“Log Data”). This Log Data may include your computer’s Internet Protocol (“IP”) address, browser type, browser version, pages of our Service visited, date and time of your visit, time spent on those pages, and other relevant statistics.
Cookies
Cookies are small data files that may include an anonymous unique identifier. Cookies are sent to your browser from our website and stored on your device’s hard drive. We use cookies to gather information and enhance your experience on our Service. You can instruct your browser to refuse all cookies or alert you when a cookie is being sent; however, some portions of our Service may not function properly if you disable cookies.
Service Providers
We may engage third-party companies and individuals to support our Service, facilitate the Service, provide it on our behalf, perform Service-related functions, or assist in analysing Service utilisation. These third parties may have access to your Personal Information solely to perform these tasks on our behalf and are legally obligated not to disclose or use it for other purposes.
Security
The security of your Personal Information is a priority for us. While we strive to implement commercially acceptable measures to protect your Personal Information, no method of transmission over the Internet or electronic storage is completely secure. We cannot guarantee absolute security but remain committed to protecting your data to the best of our ability.
Links to Other Sites
Our Service may contain links to external sites not operated by us. Clicking on a third-party link directs you to that site. We encourage reviewing the Privacy Policy of each site visited. We have no control over and assume no responsibility for third-party site content, privacy policies, or practices.
Children’s Privacy
Our Service is not intended for individuals under the age of 18 (“Children”). We do not knowingly collect personally identifiable information from children under 18. If you become aware that your child has provided Personal Information, please contact us immediately, and we will take steps to delete such information promptly.
Compliance With Laws
We will not disclose your Personal Information unless required by law or in response to a legal subpoena.
Changes to This Privacy Policy
We may revise this Privacy Policy periodically. Any changes will be posted here, with notification of significant changes provided by updating the date at the top of this page. We recommend periodically reviewing this Privacy Policy to stay informed. Continued use of our Service following posted changes constitutes your acceptance of those changes.
Contact Us
For questions, concerns, or requests regarding this Privacy Policy, please contact us at [email protected].