Privacy Policy for Sickleverse

Last updated 6/9/26

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:

lewis@drlewisthomas.com

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 usInformation 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
  • Your name and email address (when you sign up for emails, masterclasses, or downloads)
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 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 data.

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 communication

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 transfer

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 and tracking

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 accountEmail 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:

lewis@drlewisthomas.com

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:

lewis@drlewisthomas.com

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. Education 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.