Privacy Policy for Sickleverse
Last updated: 6 September 2026
1. Who we are
Sickleverse is an online platform providing educational content, courses, resources and community-based education relating to sickle cell disease.
Sickleverse is operated by Dr Lewis Thomas.
For the purposes of UK data protection law, Dr Lewis Thomas is the data controller for personal information collected through Sickleverse, including through the Sickleverse website and Sickleverse courses hosted on Thinkific.
If you have any questions about this Privacy Policy or how your personal information is used, you can contact:
2. What information we collect
Depending on how you use Sickleverse, we may collect:
Your name and email address
Contact information you provide to us
Information required to create and manage your course account
Information about courses or resources you have purchased or registered for
Payment and transaction information, such as the product purchased, amount paid and payment status
Course activity, including course enrolment, progress and completion
Information you provide through forms, surveys, feedback, applications or questionnaires
Questions or messages you send to us
Information you provide when registering for live sessions, masterclasses or events
Your communication and email preferences
Basic website and platform usage information, such as pages viewed, links clicked, device information and how you interact with our content
Payment card details are processed by our payment providers. Sickleverse does not normally receive or store your full card details.
3. Health information
Because Sickleverse provides education about sickle cell disease, you may sometimes choose to provide information relating to your own health or the health of a child or family member.
Health information is considered special category personal data under UK data protection law.
You are not required to provide detailed personal medical information in order to access the educational content of the Sickleverse website or courses unless this is specifically requested for a particular service.
Where you voluntarily provide health information, for example through a question, form, live session or support service, we will only use it for the purpose for which you provided it. Where required by law, we will rely on your explicit consent to process this information.
Please avoid sharing more medical or identifying information than is necessary when submitting questions or feedback.
4. How we use your information
We may use your information to:
Create and manage your Sickleverse or Thinkific course account
Process course purchases and other payments
Provide access to courses, guides, downloads and other resources
Track course progress and completion
Manage registrations for live sessions, masterclasses and events
Send important information relating to something you have purchased or registered for
Respond to questions, requests or enquiries
Provide customer support
Send educational emails, newsletters and relevant Sickleverse updates where you have agreed to receive them or where we are otherwise permitted to do so
Manage your communication preferences
Improve our courses, website, educational content and services
Understand how people use our website and courses
Maintain the security and integrity of our website, course platform and payment systems
Prevent fraud, misuse or unauthorised access
Maintain financial and transaction records
Meet our legal, accounting, tax and regulatory obligations
We do not sell your personal information.
5. Our lawful basis for using your information
UK data protection law requires us to have a lawful reason for processing your personal information.
Depending on the circumstances, we may rely on:
Contract
We may need to process your information in order to provide something you have requested or purchased.
For example, we need your account and contact information to enrol you on a course, process your purchase and give you access to the course.
Consent
We may rely on your consent where you choose to:
Join our email list
Receive marketing or educational communications where consent is required
Provide certain optional information
Provide health information where explicit consent is required
You can withdraw your consent at any time.
Legitimate interests
We may process information where it is reasonably necessary to operate and improve Sickleverse, provided that these interests do not override your rights and interests.
This may include:
Responding to enquiries
Improving our courses and website
Understanding how customers use our services
Maintaining security
Preventing fraud and misuse
Keeping appropriate business records
Legal obligations
We may retain or process certain information where required to comply with legal, accounting, tax or regulatory requirements.
6. Course purchases and Thinkific
Sickleverse uses Thinkific to host and deliver online courses, including Sickle Cell Red Flags for Parents.
When you create an account, enrol on a course or purchase a course through our Thinkific site, information may be processed through Thinkific in order to:
Create your student account
Process your enrolment
Provide access to purchased content
Record your course progress
Manage your account
Process transactions
Provide technical and platform functionality
Thinkific may collect additional technical information relating to your use of its platform in accordance with its own privacy practices.
7. Payments
Payments for Sickleverse products and courses may be processed through Thinkific Payments, Stripe or other authorised payment processing providers where applicable.
These providers process payment information securely on our behalf.
Sickleverse does not normally receive or store your complete debit or credit card number.
We may receive and retain information about the transaction, such as:
Your name
Your email address
The product purchased
The amount paid
The date of the transaction
Payment status
Transaction or order reference numbers
We may retain transaction records where necessary for accounting, tax, fraud prevention, chargeback management and legal purposes.
8. Email communications
If you join the Sickleverse email list, you may receive:
Educational information about sickle cell disease
Information about Sickleverse resources and courses
Invitations to masterclasses, webinars or events
Updates about new content
Relevant announcements
Occasional information about paid Sickleverse products or services
You can unsubscribe from marketing emails at any time using the unsubscribe link included in our emails.
We may still send essential service communications where necessary, for example information about a course you have purchased, changes affecting your account or important information concerning a transaction.
9. Services and third-party providers we use
We use third-party platforms to operate Sickleverse.
These may include:
Thinkific, to host and deliver online courses and manage student accounts
Thinkific Payments and payment processing partners, including Stripe where applicable, to process payments
Webflow, to host and operate the main Sickleverse website
Kit, to manage email subscriptions and send emails
Zapier, to connect systems and automate workflows
Zoom, to provide live sessions, webinars and masterclasses
Google Forms, to collect feedback, applications, questionnaires or survey responses
YouTube, to host and embed video content
These organisations may process personal information on our behalf or as independent data controllers for certain aspects of their services.
They operate under their own privacy and security policies.
We only share personal information with service providers where reasonably necessary to operate Sickleverse or provide the services you have requested.
10. International data transfers
Some of the technology providers we use operate internationally and may process or store personal information outside the United Kingdom.
Where personal information is transferred internationally, we take reasonable steps to ensure that appropriate safeguards are in place where required by UK data protection law.
Depending on the provider and destination, these safeguards may include UK adequacy regulations or approved contractual protections for international transfers.
You can contact us if you would like further information about international transfers relating to your personal information.
11. Cookies
The Sickleverse website and course platform may use cookies and similar technologies to support essential functionality, remember preferences, understand how our services are used and, where applicable, measure performance.
For more information about the cookies we use, why we use them, and how you can manage your preferences, please see our separate Cookie Policy.
12. How we share your information
We do not sell your personal information.
We may share information with:
Technology providers that help us operate Sickleverse
Course hosting providers
Payment processors
Email service providers
Webinar and video platforms
Professional advisers where reasonably necessary
Government, regulatory, law enforcement or legal authorities where required by law
We only share information where there is a legitimate reason for doing so.
13. How long we keep your information
We keep personal information only for as long as reasonably necessary for the purpose for which it was collected and to meet any legal or regulatory requirements.
The exact period will depend on the type of information.
For example:
Course account and enrolment information may be retained while your account remains active and for a reasonable period afterwards
Course progress information may be retained as part of your student account
Email subscription information may be retained until you unsubscribe
We may retain limited information after you unsubscribe so that we can record and respect your preference not to receive marketing communications
Enquiry and customer support information will be retained only for as long as reasonably necessary
Payment and transaction records may be retained for up to six years, or longer where required, for tax, accounting, legal, fraud prevention or dispute purposes
We may securely delete or anonymise information when it is no longer required.
14. Data security
We take reasonable technical and organisational measures to protect personal information from:
Unauthorised access
Loss
Misuse
Alteration
Disclosure
Destruction
We also use established third-party providers to operate our website, course platform, email systems and payment services.
However, no internet-based system can guarantee absolute security.
15. Your data protection rights
Depending on the circumstances, UK data protection law gives you rights including the right to:
Request access to personal information we hold about you
Request correction of inaccurate or incomplete information
Request deletion of your personal information
Request restriction of how your information is processed
Object to certain uses of your personal information
Request transfer of certain information to you or another organisation
Withdraw your consent where processing is based on consent
Some of these rights only apply in certain circumstances.
You also have the right to object to your personal information being used for direct marketing at any time.
To exercise any of these rights, contact:
We may need to verify your identity before completing certain requests.
16. Complaints
If you are concerned about how we have handled your personal information, please contact us first at:
You also have the right to make a complaint to the Information Commissioner's Office, the UK's data protection regulator.
Information about making a complaint is available from the Information Commissioner's Office at ico.org.uk.
17. Changes to this Privacy Policy
We may update this Privacy Policy from time to time to reflect changes to:
Sickleverse services
The technology providers we use
Our data processing activities
Applicable laws or regulations
The latest version will always be made available on the relevant Sickleverse website or course platform.
The date at the top of this policy indicates when it was last updated.
18. Educational and medical information
Sickleverse provides educational information about sickle cell disease.
Information provided through the Sickleverse website, courses, emails, videos or other educational resources is not a substitute for personalised medical advice, diagnosis or treatment from your own healthcare professional.
Personal information you provide to Sickleverse does not establish a doctor-patient relationship with Dr Lewis Thomas.