Last updated: 5th of August 2026
1. Introduction
Sickle Synced CIC (“we”, “us”, “our”) respects your privacy and is committed to protecting your personal information.
This Privacy Policy explains how we collect, use, store and protect personal information when you visit our website, engage with our online community, submit content, register for events, or contact us.
Sickle Synced CIC is a community interest company focused on sickle cell awareness, education and community engagement. We are not a clinical or medical service and do not provide medical advice.
Sickle Synced CIC is responsible for deciding how your personal information is processed under UK data protection law.
2. Information We Collect
We may collect the following personal information:
Information collected through our website
When you interact with our website, we may collect:
- Your name
- Your email address
- Comments submitted through our website
- Information provided when you contact us through our contact form
We encourage users not to share sensitive personal information, including medical information, in public areas of our website.
Information collected through MailerLite
When you sign up to our mailing list through the MailerLite pop-up on our website, we may collect:
- Your name
- Your email address
You will be asked to provide your consent to receive communications from Sickle Synced CIC.
Information collected through Google Forms
Testimonials and blog post submissions
We may collect:
- Your name or preferred name
- Your email address
- Your testimonial, personal experience or blog post submission
- Any additional information you choose to provide
- Your preference regarding how your contribution is credited (for example, anonymously or using your first name and initial of your surname)
Feedback submissions
We may collect:
- Your name (where provided)
- Your email address (where provided)
- Feedback relating to our services, events or community activities
Information collected through Eventbrite
When registering for certain events through Eventbrite, we may collect:
- Your name
- Your email address
- Your area/location
- Sickle cell status where this is necessary for a specific event
- Other relevant information required to support event delivery
- Consent preferences relating to photography, video recordings and use of event-related content
- Uploads or materials provided where required for a specific event
Health information will only be requested where it is necessary for a specific event.
Sickle Synced CIC does not maintain health records or store individuals’ sickle cell status as part of an ongoing database.
3. How We Collect Your Information
We collect information when you:
- Submit a query through our contact form
- Leave a comment on our website
- Sign up to our mailing list through the MailerLite pop-up on our website
- Submit a testimonial, blog post or community story through Google Forms
- Provide feedback through Google Forms
- Register for an event through Eventbrite
- Provide consent to appear in photographs, videos or other event-related content
- Upload materials requested for specific events
We may also collect limited technical information through cookies and similar technologies.
4. How We Use Your Information
We use your information for the following purposes:
Website enquiries and community engagement
We use information submitted through our website to:
- Respond to enquiries
- Communicate with members of the sickle cell community
- Support community engagement
Mailing list
Where you provide consent through the MailerLite mailing list sign-up, your name and email address are used to:
- Send updates about Sickle Synced CIC
- Share information about upcoming events, activities and resources
- Gather feedback about our work
You can unsubscribe from our mailing list at any time by using the unsubscribe option at the bottom of our emails.
Testimonials, blog posts and community stories
Where you submit content, we use your information to:
- Review your submission
- Communicate with you about your contribution
- Obtain consent before publication
- Publish approved content according to your preferences
Events
Information collected through Eventbrite is used to:
- Manage event registrations
- Communicate important event information
- Support the safe and effective delivery of events
- Manage consent relating to photographs, videos and uploaded materials
- Gather feedback after events
Improving our services
We may use feedback provided through forms to understand how we can improve our services, events and community support.
5. Our Legal Basis for Processing Information
Under UK GDPR, we rely on the following lawful bases when processing personal information:
Consent
We rely on your consent when you choose to:
- Join our mailing list
- Submit a testimonial, blog post or community story
- Allow your contribution to be published
- Choose how your name is displayed alongside submitted content
- Provide feedback where consent is required
- Allow photographs, videos or recordings of you to be used on our website, social media channels or promotional materials
- Provide health information for a specific event where this information is necessary
You can withdraw your consent at any time. This will not affect processing that has already taken place lawfully before your consent was withdrawn.
Legitimate interests
We rely on legitimate interests where processing information is necessary for the operation of Sickle Synced CIC, including:
- Responding to enquiries
- Managing website comments
- Moderating community discussions
- Protecting users and maintaining a safe online environment
- Managing event administration and communication
- Keeping records of permissions and consent provided by contributors
Legal obligations
In some circumstances, we may process information where we are required to do so to comply with legal or regulatory obligations.
6. Health Information and Sensitive Personal Data
Due to the nature of our work, individuals may voluntarily share health-related information.
We do not request health information through general website comments, blog submissions or general enquiries.
If sensitive personal information is shared publicly through website comments, comments may be removed, edited or not published to protect your privacy.
If health information is shared through an enquiry, we may remind individuals that Sickle Synced CIC is not a clinical service and may signpost individuals towards appropriate healthcare professionals.
Where health information is collected for a specific event, it will only be collected where necessary and handled appropriately.
7. Testimonials, Blog Posts and Community Stories
We may invite individuals to submit testimonials, personal experiences, blog posts or community stories to support our awareness and education work.
Submissions may be collected through Google Forms.
When submitting content, we may collect:
- Your name or preferred name
- Your email address
- The content you provide
- Your preference for how your contribution is credited
We will only publish testimonials, blog posts or personal stories where we have received appropriate consent.
Testimonials may be published:
- Anonymously; or
- Using your first name and the initial of your surname
We will not publish identifying information without your agreement.
If your submission includes personal experiences or health-related information, this will only be published with your permission.
8. Photos, Videos and Event Content
Photographs, videos, recordings and other event-related content may be collected at Sickle Synced CIC events.
Where required, Eventbrite registration forms may ask attendees to provide consent regarding:
- Whether they are happy to appear in photographs or videos
- Whether they are happy for photographs, videos or recordings to be shared on our website, social media channels or promotional materials
- Any uploaded materials requested as part of the event
Individuals can choose whether they wish to provide consent.
We will only use identifiable photographs, videos or uploaded content where appropriate consent has been provided.
9. Sharing Your Information
We do not sell, rent or share your personal information for marketing purposes.
We use trusted third-party services to support our activities, including:
- Google Forms for collecting testimonials, blog submissions and feedback
- MailerLite for collecting mailing list registrations, storing mailing list information and sending emails
- Eventbrite for managing event registrations and collecting event-related information and consent
These providers process information on our behalf and have their own privacy policies and security measures.
We may also use website-related services, such as hosting providers, analytics tools or cookie management services. Details will be updated once confirmed.
10. How Long We Keep Your Information
We keep personal information only for as long as necessary for the purpose it was collected.
Examples:
- Mailing list information is kept until you unsubscribe or request deletion.
- Testimonial and blog submission information may be kept for as long as necessary to manage publication permissions and records.
- Consent records for photographs, videos and published content may be kept as evidence that permission was provided.
- Enquiry information is kept only for as long as necessary to respond and manage your request.
We may retain certain information where required by law.
11. How We Protect Your Information
We take appropriate steps to protect personal information, including:
- Using secure third-party platforms
- Applying password protection and security measures
- Restricting access to personal information
Currently, access to personal information is limited to the Founding Director of Sickle Synced CIC.
12. Your Data Protection Rights
Under UK GDPR, you have rights regarding your personal information, including:
- The right to request access to the personal information we hold about you
- The right to request correction of inaccurate information
- The right to request deletion of your information where appropriate
- The right to withdraw consent where we rely on consent
- The right to unsubscribe from communications
To exercise these rights, please contact us.
13. Cookies
Our website may use cookies and similar technologies to improve your browsing experience and understand how visitors use our website.
When you first visit our website, you will be given the option to accept or decline cookies through our cookie consent banner.
Further information about the specific cookies used on our website will be added once confirmed.
14. Third-Party Links
Our website may contain links to external websites, including platforms such as Eventbrite and other resources.
We are not responsible for the privacy practices or content of third-party websites.
We encourage you to review the privacy policies of third-party websites before providing personal information.
15. Changes to This Privacy Policy
We may update this Privacy Policy from time to time.
The latest version will always be available on our website. The “Last updated” date at the top of this policy will show when changes were made.
16. Contact Us
If you have questions about this Privacy Policy or wish to exercise your data protection rights, you can contact us:
Email: shorna.sicklesynced@gmail.com
Alternatively, you can contact us through the website get in touch form.
