Privacy policy
Last updated: July 2026
The Sickle Cell Care Collective (SCCC) is committed to protecting your privacy and handling your personal information responsibly.
This Privacy Policy explains what information we collect, how we use it, who we share it with and your rights when you use our website, complete one of our surveys, make a donation or contact us.
By using this website, you agree to the collection and use of information in accordance with this Privacy Policy.
Information We Collect
Information You Provide
This may include:
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Your name
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Email address
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Information submitted through contact forms
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Survey responses
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Feedback
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Donation information (where applicable)
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Any other information you choose to provide when contacting us
Providing personal information is voluntary unless it is required to deliver a specific service.
Survey Information
Some of our programmes, including Voices in Crisis and future research projects, collect information to help us better understand the experiences of people living with sickle cell disease, their families, carers and healthcare professionals.
Depending on the survey, we may collect information such as:
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Age group
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Ethnicity
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General health information
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Healthcare experiences
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Geographic region
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Professional role (where applicable)
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Contact details (where you choose to provide them)
Providing contact details is optional unless stated otherwise.
Website Information
When you visit our website we may automatically collect certain technical information, including:
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IP address
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Browser type
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Device type
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Operating system
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Pages visited
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Time spent on the website
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Referring website
This information helps us understand how our website is used and improve our content and services.
How We Use Your Information
We use your information to:
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Respond to enquiries
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Provide information you have requested
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Improve our website and resources
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Understand the experiences of people affected by sickle cell disease
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Develop educational resources
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Inform research and quality improvement initiatives
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Produce anonymised reports and findings
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Process donations (where applicable)
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Comply with legal obligations
We will only process your personal information where we have a lawful basis under UK data protection legislation.
Research & Survey Data
Research is a key part of the Sickle Cell Care Collective's mission to improve sickle cell care.
Information collected through surveys may be used to:
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Analyse trends and experiences
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Inform reports and publications
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Develop educational resources
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Support healthcare improvement
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Shape future research projects
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Support advocacy work
Where survey findings are published or shared, they will be anonymised and individuals will not be identifiable unless explicit permission has been provided.
Participation in our surveys is entirely voluntary.
Donations & Payments
If you choose to make a donation through our website, payments will be processed securely by our payment provider.
We do not store or have access to your full payment card details.
Payment providers may collect and process your information in accordance with their own privacy policies.
Sharing Your Information
We do not sell your personal information.
We may share your information with trusted third-party service providers who help us operate our website or deliver our services, including:
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Shopify
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Website analytics providers
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Survey platforms
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Payment providers (where applicable)
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Email service providers
We may also disclose information where required by law or to protect our legal rights.
Survey findings may be shared publicly or with partner organisations only in anonymised form unless you have explicitly agreed otherwise.
Relationship with Shopify
Our website is hosted by Shopify.
Shopify may collect certain technical information about your visit, including device information, browser information, IP address and website usage in order to provide and maintain our website.
Where Shopify provides payment services or other website functionality, Shopify may process personal information in accordance with its own Privacy Policy.
You can learn more by visiting the Shopify Privacy Policy.
Cookies
Our website uses cookies and similar technologies to:
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Improve website functionality
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Remember your preferences
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Understand how visitors use our website
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Improve performance and user experience
You can manage or disable cookies through your browser settings.
Third-Party Websites
Our website contains links to external websites and resources.
These websites operate independently from the Sickle Cell Care Collective and have their own privacy policies.
We are not responsible for the privacy practices, content or security of third-party websites and encourage you to review their privacy policies before providing personal information.
Children's Privacy
Some of our resources are intended to support children and young people living with sickle cell disease and their families.
Where personal information relating to a child is collected through our website or surveys, it should be provided by a parent, guardian or another person with appropriate responsibility for that child.
Security & Retention
We take appropriate technical and organisational measures to protect your personal information from unauthorised access, loss or misuse.
Although we work hard to keep your information secure, no method of electronic transmission or online storage can be guaranteed to be completely secure.
We will only retain personal information for as long as necessary to fulfil the purposes outlined in this Privacy Policy or to comply with legal obligations.
International Transfers
Some of the third-party services we use, including Shopify, may process or store personal information outside the United Kingdom.
Where this happens, we take appropriate steps to ensure your information receives an adequate level of protection in accordance with UK data protection law.
Your Rights
Under UK data protection law, you have the right to:
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Request access to your personal information
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Request correction of inaccurate information
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Request deletion of your personal information
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Restrict or object to certain processing
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Withdraw consent where processing is based on consent
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Request a copy of your personal information
If you wish to exercise any of these rights, please contact us using the email address below.
Changes to this Privacy Policy
We may update this Privacy Policy from time to time to reflect changes in our services, legal obligations or how we process personal information.
The latest version will always be published on this page with the updated revision date.
Contact
If you have any questions about this Privacy Policy or how we handle your personal information, please contact us at: