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Living Life With HS

Privacy Policy

Privacy Policy

Last updated 11/10/2026

This Privacy Notice for LIVING LIFE WITH HS C.I.C., a registered Community Interest Company in England and Wales (Company Number 17112524) (‘we‘, ‘us‘, or ‘our‘), describes how and why we might access, collect, store, use, and/or share (‘process‘) your personal information when you use our services (‘Services‘), including when you:

Questions or concerns? Reading this Privacy Notice will help you understand your privacy rights and choices. We are responsible for making decisions about how your personal information is processed. If you do not agree with our policies and practices, please do not use our Services. If you still have any questions or concerns, please contact us at livinglifewithhs@gmail.com.

SUMMARY OF KEY POINTS

This summary provides key points from our Privacy Notice, but you can find out more details about any of these topics by clicking the link following each key point or by using our table of contents below to find the section you are looking for.

What personal information do we process? When you visit, use, or navigate our Services, we may process personal information depending on how you interact with us and the Services, the choices you make, and the products and features you use.

Do we process any sensitive personal information? Some of the information may be considered ‘special’ or ‘sensitive’ in certain jurisdictions, for example your racial or ethnic origins, sexual orientation, and religious beliefs. We may process sensitive personal information when necessary with your consent or as otherwise permitted by applicable law.

Do we collect any information from third parties? We do not collect any information from third parties, except that if you choose Sign in with Google for the App, Google shares your name, email address and profile picture with us.

How do we process your information? We process your information to provide, improve, and administer our Services, communicate with you, for security and fraud prevention, and to comply with law. We may also process your information for other purposes with your consent. We process your information only when we have a valid legal reason to do so.

In what situations and with which parties do we share personal information? We may share information in specific situations and with specific third parties.

How do we keep your information safe? We have adequate organisational and technical processes and procedures in place to protect your personal information. However, no electronic transmission over the internet or information storage technology can be guaranteed to be 100% secure, so we cannot promise or guarantee that hackers, cybercriminals, or other unauthorised third parties will not be able to defeat our security and improperly collect, access, steal, or modify your information.

What are your rights? Depending on where you are located geographically, the applicable privacy law may mean you have certain rights regarding your personal information.

How do you exercise your rights? The easiest way to exercise your rights is by visiting https://livinglifewithhs.co.uk/contact-us/, or by contacting us. We will consider and act upon any request in accordance with applicable data protection laws.

TABLE OF CONTENTS

  1. WHAT INFORMATION DO WE COLLECT?
  2. HOW DO WE PROCESS YOUR INFORMATION?
  3. WHAT LEGAL BASES DO WE RELY ON TO PROCESS YOUR PERSONAL INFORMATION?
  4. WHEN AND WITH WHOM DO WE SHARE YOUR PERSONAL INFORMATION?
  5. DO WE USE COOKIES AND OTHER TRACKING TECHNOLOGIES?
  6. IS YOUR INFORMATION TRANSFERRED INTERNATIONALLY?
  7. HOW LONG DO WE KEEP YOUR INFORMATION?
  8. HOW DO WE KEEP YOUR INFORMATION SAFE?
  9. DO WE COLLECT INFORMATION FROM MINORS?
  10. WHAT ARE YOUR PRIVACY RIGHTS?
  11. CONTROLS FOR DO-NOT-TRACK FEATURES
  12. DO UNITED STATES RESIDENTS HAVE SPECIFIC PRIVACY RIGHTS?
  13. DO OTHER REGIONS HAVE SPECIFIC PRIVACY RIGHTS?
  14. DO WE MAKE UPDATES TO THIS NOTICE?
  15. HOW CAN YOU CONTACT US ABOUT THIS NOTICE?
  16. HOW CAN YOU REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?

1. WHAT INFORMATION DO WE COLLECT?

Personal information you disclose to us

In Short: We collect personal information that you provide to us.

We collect personal information that you voluntarily provide to us when you express an interest in obtaining information about us or our products and Services, when you participate in activities on the Services, or otherwise when you contact us.

Personal Information Provided by You. The personal information that we collect depends on the context of your interactions with us and the Services, the choices you make, and the products and features you use. The personal information we collect may include the following:

  • names
  • email addresses
  • phone numbers

Sensitive Information. When necessary, with your consent or as otherwise permitted by applicable law, we process the following categories of sensitive information:

  • health data (Because our C.I.C. supports those with Hidradenitis Suppurativa (HS), interacting with us, completing our forms, or joining our support groups may implicitly or explicitly reveal information about your health condition. We process this special category data only with your explicit consent to provide you with peer support and community services.)
  • information revealing political opinions
  • information revealing race or ethnic origin
  • data about a person’s sex life or sexual orientation
  • information revealing religious or philosophical beliefs

Your Stories and similar community submissions. If you submit a story, photos, or related materials (for example via our Your Stories form), we process that information — which may include special category health data — to prepare and, where agreed, publish peer-support content on our website. We rely on your explicit consent for that processing. Where the form includes a tick-box allowing AI-assisted processing, we use AI tools under our direction to help prepare that content. Until our processor arrangements for AI tooling are fully in place, photos submitted with stories may be handled manually by a human team member.

Payment Data. We may collect data necessary to process your payment if you choose to make purchases, such as your payment instrument number, and the security code associated with your payment instrument. All payment data is handled and stored by Zeffy and WooCommerce. You may find their privacy notice link(s) here: https://support.zeffy.com/privacy-policy-5tndw.

All personal information that you provide to us must be true, complete, and accurate, and you must notify us of any changes to such personal information.

Information automatically collected

In Short: Some information — such as your Internet Protocol (IP) address and/or browser and device characteristics — is collected automatically when you visit our Services.

We automatically collect certain information when you visit, use, or navigate the Services. This information does not reveal your specific identity (like your name or contact information) but may include device and usage information, such as your IP address, browser and device characteristics, operating system, language preferences, referring URLs, device name, country, location, information about how and when you use our Services, and other technical information. This information is primarily needed to maintain the security and operation of our Services, and for our internal analytics and reporting purposes.

Like many businesses, we also collect information through cookies and similar technologies. You can find out more about this in our Cookie Notice: https://livinglifewithhs.co.uk/cookie-policy.

The information we collect includes:

  • Log and Usage Data. Log and usage data is service-related, diagnostic, usage, and performance information our servers automatically collect when you access or use our Services and which we record in log files.
  • Device Data. We collect device data such as information about your computer, phone, tablet, or other device you use to access the Services.
  • Location. We ask which region you live in; we do not collect your device’s location.

Google API
Our use of information received from Google APIs will adhere to Google API Services User Data Policy, including the Limited Use requirements.

1a. NexusHub community app (app.livinglifewithhs.co.uk)

If you join our app we collect: your name, email address, password (stored scrambled, never readable), sex, region, age band, ethnicity, HS stage, whether you are a patient or carer, and optionally your phone number, bio, username and profile picture. In the app you may also post messages in group rooms, send private messages and voice notes, join private groups, react to messages or report messages in group rooms, and use the optional health tracker (symptoms, pain, mood, triggers, medicines, appointments and notes). We also record the device type you use and when you were last active, to keep the app working and secure.

Health information, HS stage, ethnicity and anything about your health that you post or record is special category data. We process it only with your explicit consent, which you give when you tick the boxes on joining.

You can withdraw your consent at any time by deleting your account in Settings or emailing us at livinglifewithhs@gmail.com.

2. HOW DO WE PROCESS YOUR INFORMATION?

In Short: We process your information to provide, improve, and administer our Services, communicate with you, for security and fraud prevention, and to comply with law.

We process your personal information for a variety of reasons, depending on how you interact with our Services, including:

  • To respond to user inquiries/offer support to users. We may process your information to respond to your inquiries and solve any potential issues you might have with the requested service.
  • To send administrative information to you. We may process your information to send you details about our products and services, changes to our terms and policies, and other similar information.
  • To request feedback. We may process your information when necessary to request feedback and to contact you about your use of our Services.
  • To send you marketing and promotional communications. We may process the personal information you send to us for our marketing purposes, if this is in accordance with your marketing preferences. You can opt out of our marketing emails at any time.
  • To protect our Services. We may process your information as part of our efforts to keep our Services safe and secure, including fraud monitoring and prevention.
  • To identify usage trends. We may process information about how you use our Services to better understand how they are being used so we can improve them.
  • To save or protect an individual’s vital interest. We may process your information when necessary to save or protect an individual’s vital interest, such as to prevent harm.
  • To prepare and publish Your Stories and related community content, including with AI-assisted tools where you have consented.

3. WHAT LEGAL BASES DO WE RELY ON TO PROCESS YOUR INFORMATION?

In Short: We only process your personal information when we believe it is necessary and we have a valid legal reason (i.e. legal basis) to do so under applicable law, like with your consent, to comply with laws, to provide you with services to enter into or fulfil our contractual obligations, to protect your rights, or to fulfil our legitimate business interests.

If you are located in the EU or UK, this section applies to you.

The General Data Protection Regulation (GDPR) and UK GDPR require us to explain the valid legal bases we rely on in order to process your personal information. As such, we may rely on the following legal bases to process your personal information:

  • Consent. We may process your information if you have given us permission (i.e. consent) to use your personal information for a specific purpose. You can withdraw your consent at any time.
  • Performance of a Contract. We may process your personal information when we believe it is necessary to fulfil our contractual obligations to you, including providing our Services or at your request prior to entering into a contract with you.
  • Legitimate Interests. We may process your information when we believe it is reasonably necessary to achieve our legitimate business interests and those interests do not outweigh your interests and fundamental rights and freedoms.
  • Legal Obligations. We may process your information where we believe it is necessary for compliance with our legal obligations, such as to cooperate with a law enforcement body or regulatory agency, exercise or defend our legal rights, or disclose your information as evidence in litigation in which we are involved.
  • Vital Interests. We may process your information where we believe it is necessary to protect your vital interests or the vital interests of a third party, such as situations involving potential threats to the safety of any person.

For the app: we run your account and the community on the basis of our agreement with you (contract) and our legitimate interest in providing a safe peer-support service. We process your health information, HS stage and ethnicity under Article 9(2)(a) UK GDPR, your explicit consent. We keep moderation and ban records on the basis of our legitimate interest in keeping members safe and preventing banned people from rejoining.

4. WHEN AND WITH WHOM DO WE SHARE YOUR PERSONAL INFORMATION?

In Short: We may share information in specific situations described in this section and/or with the following third parties.

Vendors, Consultants, and Other Third-Party Service Providers. We may share your data with third-party vendors, service providers, contractors, or agents (‘third parties‘) who perform services for us or on our behalf and require access to such information to do that work. We have contracts in place with our third parties, which are designed to help safeguard your personal information.

The third parties we may share personal information with are as follows:

  • Web and Mobile Analytics: Google Analytics
  • User Contact and Submission Forms: our own website
  • Cloud Storage and Data Management: Google Workspace / Google Drive (where we securely store submitted data)
  • Order Fulfilment (Print-on-Demand): Printify (We share your name, shipping address, and order details necessary to print and ship your merchandise)
  • Payment Processors: WooCommerce, Zeffy, and associated payment gateways (such as Stripe, PayPal, or Apple/Google Pay) to securely process your merchandise purchases or donations.
  • Community and Communication Platforms: WhatsApp (Meta Platforms, Inc.)
  • AI tools. We use AI tools now, including Grok Bot, under our direction. We use them for internal work such as drafting website content, helping process form submissions, and other day-to-day CIC admin. Where a form has an AI tick, we use AI on that submission only if you tick it. Living Life With HS C.I.C. remains the data controller. We are putting the proper contractual data arrangements in place for this tooling. Those arrangements are the plan we are working to. They are not finished. This notice does not claim a signed data-processing contract we do not have yet.

CRITICAL NOTICE REGARDING WHATSAPP SUPPORT GROUPS:
Please be aware that if you choose to join any of our WhatsApp Support Groups (including the general, female-only, or male-only groups), your phone number and WhatsApp profile name will be visible to all other members of that specific group. By requesting to join and participating in these groups, you explicitly consent to this sharing of your personal data with the other group members.

Who can see app data

Other members see your display name, profile picture and anything you post in rooms they are in. Our admins (currently the Director, Gareth Marshall, and our Data Protection Officer, Stuart Axford) can see member contact details, messages reported to them from group rooms, and moderation records. A weekly backup of member names, email addresses, phone numbers and the moderation log is kept in a private Google Drive folder. Your health tracker is private to you.

Private messages, voice notes and private groups can be seen only by the people in them. Admins cannot see or monitor private messages or private groups, and cannot act on anything said in them; you can remove or block people yourself.

App hosting, email and sign-in

App hosting and email: Hostinger (hosts the app, its database and voice notes, UK/EU servers). App emails (account, verification and notification emails) are sent through Hostinger’s email service.

Sign in with Google: if you choose it, Google shares your name, email address and profile picture with us; we do not get your Google password or access to your Gmail or Drive.

5. DO WE USE COOKIES AND OTHER TRACKING TECHNOLOGIES?

In Short: We may use cookies and other tracking technologies to collect and store your information.

We may use cookies and similar tracking technologies (like web beacons and pixels) to gather information when you interact with our Services. Some online tracking technologies help us maintain the security of our Services, prevent crashes, fix bugs, save your preferences, and assist with basic site functions.

Specific information about how we use such technologies and how you can refuse certain cookies is set out in our Cookie Notice: https://livinglifewithhs.co.uk/cookie-policy.

Google Analytics
We may share your information with Google Analytics to track and analyse the use of the Services. To opt out of being tracked by Google Analytics across the Services, visit https://tools.google.com/dlpage/gaoptout.

NexusHub app: The NexusHub app uses only essential cookies and device storage to keep you signed in and remember your settings. It does not use advertising or analytics cookies.

6. IS YOUR INFORMATION TRANSFERRED INTERNATIONALLY?

In Short: We may transfer, store, and process your information in countries other than your own.

Our website is hosted by Hostinger, with servers primarily located in the United Kingdom and/or the European Union. However, we also use third-party service providers (such as Google and Meta/WhatsApp) whose servers are located globally, including in the United States. Regardless of your location, please be aware that your information may be transferred to, stored by, and processed by us in our facilities and in the facilities of the third parties with whom we may share your personal information.

We have implemented appropriate safeguards to protect your personal information, including the use of Standard Contractual Clauses (and the UK International Data Transfer Addendum or UK-US data bridge where applicable), to ensure that any transfer of data complies with applicable data protection laws.

7. HOW LONG DO WE KEEP YOUR INFORMATION?

In Short: We keep your information for as long as necessary to fulfil the purposes outlined in this Privacy Notice unless otherwise required by law.

We will only keep your personal information for as long as it is necessary for the purposes set out in this Privacy Notice.

Our Data Retention Schedule:

WhatsApp Support Groups: If you leave our WhatsApp community, or if we remove you from a group, your contact details will be removed from our active group lists immediately.

Form submissions. Support, mailing list, blog ideas, the support group, Your Story, the survey, and similar forms are collected on our own website. We are not using Google Forms for these. We keep what you send for the purpose you agreed to when you ticked the form. We do not sell your data. We do not share information that identifies you without your consent. We do not treat a submission as anonymous. If you leave a mailing list or a support group, we delete the data we were keeping for that purpose within 12 months, as the form says. We review our records about every six months.

When we have no ongoing legitimate business need to process your personal information, we will either delete or anonymise such information, or, if this is not possible (for example, because your personal information has been stored in backup archives), then we will securely store your personal information and isolate it from any further processing until deletion is possible.

NexusHub app. We keep your account and content while you are a member. You can delete your account at any time in Settings (or email livinglifewithhs@gmail.com and we will do it for you). When you delete your account you are signed out and locked out straight away, and your data is fully erased within 30 days. Copies in our backups expire within 60 days.

What is deleted: your profile, settings, profile picture and PINs; all your Health Journey data; your own messages and voice notes in rooms, private messages and private groups; your reactions, stars, blocks, memberships and invites; your forum posts and comments; badges you hold; reports you made; and your sign-in sessions.

What is kept: messages written by other people stay, including their side of a private conversation with you. If you own a private group, it passes to its longest-standing remaining member. Badges you awarded and announcements you wrote stay, re-attributed to one of our admins. If you have an active ban, we keep a minimal record (email address, reason and dates) for 5 years so you cannot rejoin. We also keep an audit line containing a scrambled (hashed) version of your email address, as a record that the deletion was carried out.

8. HOW DO WE KEEP YOUR INFORMATION SAFE?

In Short: We aim to protect your personal information through a system of organisational and technical security measures.

We have implemented appropriate and reasonable technical and organisational security measures designed to protect the security of any personal information we process. However, despite our safeguards and efforts to secure your information, no electronic transmission over the Internet or information storage technology can be guaranteed to be 100% secure, so we cannot promise or guarantee that hackers, cybercriminals, or other unauthorised third parties will not be able to defeat our security and improperly collect, access, steal, or modify your information. Although we will do our best to protect your personal information, transmission of personal information to and from our Services is at your own risk. You should only access the Services within a secure environment.

If a data breach is likely to put your rights at risk, we will report it to the ICO within 72 hours where required and tell affected members without undue delay.

9. DO WE COLLECT INFORMATION FROM MINORS?

In Short: We do not knowingly collect data from or market to children under 18 years of age or the equivalent age as specified by law in your jurisdiction.

We do not knowingly collect, solicit data from, or market to children under 18 years of age or the equivalent age as specified by law in your jurisdiction, nor do we knowingly sell such personal information. By using the Services, you represent that you are at least 18 or the equivalent age as specified by law in your jurisdiction or that you are the parent or guardian of such a minor and consent to such minor dependent’s use of the Services. If we learn that personal information from users less than 18 years of age or the equivalent age as specified by law in your jurisdiction has been collected, we will deactivate the account and take reasonable measures to promptly delete such data from our records. If you become aware of any data we may have collected from children under age 18 or the equivalent age as specified by law in your jurisdiction, please contact us at livinglifewithhs@gmail.com.

10. WHAT ARE YOUR PRIVACY RIGHTS?

In Short: Depending on your state of residence in the US or in some regions, such as the European Economic Area (EEA), United Kingdom (UK), Switzerland, and Canada, you have rights that allow you greater access to and control over your personal information. You may review, change, or terminate your account at any time, depending on your country, province, or state of residence.

In some regions (like the EEA, UK, Switzerland, and Canada), you have certain rights under applicable data protection laws. These may include the right (i) to request access and obtain a copy of your personal information, (ii) to request rectification or erasure; (iii) to restrict the processing of your personal information; (iv) if applicable, to data portability; and (v) not to be subject to automated decision-making. In certain circumstances, you may also have the right to object to the processing of your personal information. You can make such a request by contacting us by using the contact details provided in the section ‘HOW CAN YOU CONTACT US ABOUT THIS NOTICE?‘ below.

We will consider and act upon any request in accordance with applicable data protection laws.

If you are located in the EEA or UK and you believe we are unlawfully processing your personal information, you also have the right to complain to your Member State data protection authority or UK data protection authority. You can complain to the Information Commissioner’s Office (ico.org.uk, 0303 123 1113).

If you are located in Switzerland, you may contact the Federal Data Protection and Information Commissioner.

Withdrawing your consent: If we are relying on your consent to process your personal information, which may be express and/or implied consent depending on the applicable law, you have the right to withdraw your consent at any time. You can withdraw your consent at any time by contacting us by using the contact details provided in the section ‘HOW CAN YOU CONTACT US ABOUT THIS NOTICE?‘ below.

Opting out of marketing and promotional communications: You can unsubscribe from our marketing and promotional communications at any time by clicking on the unsubscribe link in the emails that we send, or by contacting us using the details provided in the section ‘HOW CAN YOU CONTACT US ABOUT THIS NOTICE?‘ below.

Cookies and similar technologies: Most Web browsers are set to accept cookies by default. If you prefer, you can usually choose to set your browser to remove cookies and to reject cookies. If you choose to remove cookies or reject cookies, this could affect certain features or services of our Services. For further information, please see our Cookie Notice: https://livinglifewithhs.co.uk/cookie-policy.

If you have questions or comments about your privacy rights, you may email us at livinglifewithhs@gmail.com.

11. CONTROLS FOR DO-NOT-TRACK FEATURES

Most web browsers and some mobile operating systems and mobile applications include a Do-Not-Track (‘DNT’) feature or setting you can activate to signal your privacy preference not to have data about your online browsing activities monitored and collected. At this stage, no uniform technology standard for recognising and implementing DNT signals has been finalised. As such, we do not currently respond to DNT browser signals or any other mechanism that automatically communicates your choice not to be tracked online.

California law requires us to let you know how we respond to web browser DNT signals. Because there currently is not an industry or legal standard for recognising or honouring DNT signals, we do not respond to them at this time.

12. DO UNITED STATES RESIDENTS HAVE SPECIFIC PRIVACY RIGHTS?

In Short: If you are a resident of California, Colorado, Connecticut, Delaware, Florida, Indiana, Iowa, Kentucky, Maryland, Minnesota, Montana, Nebraska, New Hampshire, New Jersey, Oregon, Rhode Island, Tennessee, Texas, Utah, or Virginia, you may have the right to request access to and receive details about the personal information we maintain about you and how we have processed it, correct inaccuracies, get a copy of, or delete your personal information. You may also have the right to withdraw your consent to our processing of your personal information. These rights may be limited in some circumstances by applicable law. More information is provided below.

Categories of Personal Information We Collect

The table below shows the categories of personal information we have collected in the past twelve (12) months. The table includes illustrative examples of each category and does not reflect the personal information we collect from you. For a comprehensive inventory of all personal information we process, please refer to the section ‘WHAT INFORMATION DO WE COLLECT?‘

  • A. Identifiers: Contact details, such as real name, alias, postal address, telephone or mobile contact number, unique personal identifier, online identifier, Internet Protocol address, email address, and account name. (Collected: YES)
  • B. Personal information as defined in the California Customer Records statute: Name, contact information, education, employment, employment history, and financial information. (Collected: YES)
  • C. Protected classification characteristics under state or federal law: Gender, age, date of birth, race and ethnicity, national origin, marital status, and other demographic data. (Collected: YES)
  • D. Commercial information: Transaction information, purchase history, financial details, and payment information. (Collected: NO)
  • E. Biometric information: Fingerprints and voiceprints. (Collected: NO)
  • F. Internet or other similar network activity: Browsing history, search history, online behaviour, interest data, and interactions with our and other websites, applications, systems, and advertisements. (Collected: NO)
  • G. Geolocation data: Device location. (Collected: YES)
  • H. Audio, electronic, sensory, or similar information: Images and audio, video or call recordings created in connection with our business activities. (Collected: YES)
  • I. Professional or employment-related information: Business contact details in order to provide you our Services at a business level or job title, work history, and professional qualifications if you apply for a job with us. (Collected: YES)
  • J. Education Information: Student records and directory information. (Collected: NO)
  • K. Inferences drawn from collected personal information: Inferences drawn from any of the collected personal information listed above to create a profile or summary about, for example, an individual’s preferences and characteristics. (Collected: NO)
  • L. Sensitive personal Information: Health data. (Collected: YES)

We only collect sensitive personal information, as defined by applicable privacy laws or the purposes allowed by law or with your consent. Sensitive personal information may be used, or disclosed to a service provider or contractor, for additional, specified purposes. You may have the right to limit the use or disclosure of your sensitive personal information. We do not collect or process sensitive personal information for the purpose of inferring characteristics about you.

We may also collect other personal information outside of these categories through instances where you interact with us in person, online, or by phone or mail in the context of:

  • Receiving help through our customer support channels;
  • Participation in customer surveys or contests; and
  • Facilitation in the delivery of our Services and to respond to your inquiries.

We will use and retain the collected personal information as needed to provide the Services or for as long as it is necessary to fulfil the purposes for which it was collected.

Sources of Personal Information
Learn more about the sources of personal information we collect in ‘WHAT INFORMATION DO WE COLLECT?‘

How We Use and Share Personal Information
Learn more about how we use your personal information in the section, ‘HOW DO WE PROCESS YOUR INFORMATION?‘

Will your information be shared with anyone else?
We may disclose your personal information with our service providers pursuant to a written contract between us and each service provider. Learn more about how we disclose personal information to in the section, ‘WHEN AND WITH WHOM DO WE SHARE YOUR PERSONAL INFORMATION?‘

We may use your personal information for our own business purposes, such as for undertaking internal research for technological development and demonstration. This is not considered to be ‘selling’ of your personal information.

We have not sold or shared any personal information to third parties for a business or commercial purpose in the preceding twelve (12) months.

Your Rights
You have rights under certain US state data protection laws. However, these rights are not absolute, and in certain cases, we may decline your request as permitted by law. These rights include:

  • Right to know whether or not we are processing your personal data
  • Right to access your personal data
  • Right to correct inaccuracies in your personal data
  • Right to request the deletion of your personal data
  • Right to obtain a copy of the personal data you previously shared with us
  • Right to non-discrimination for exercising your rights
  • Right to opt out of the processing of your personal data if it is used for targeted advertising (or sharing as defined under California’s privacy law), the sale of personal data, or profiling in furtherance of decisions that produce legal or similarly significant effects (‘profiling’)

Depending upon the state where you live, you may also have the following rights:

  • Right to access the categories of personal data being processed (as permitted by applicable law, including the privacy law in Minnesota)
  • Right to obtain a list of the categories of third parties to which we have disclosed personal data (as permitted by applicable law, including the privacy law in California, Delaware, and Maryland)
  • Right to obtain a list of specific third parties to which we have disclosed personal data (as permitted by applicable law, including the privacy law in Minnesota and Oregon)
  • Right to obtain a list of third parties to which we have sold personal data (as permitted by applicable law, including the privacy law in Connecticut)
  • Right to review, understand, question, and depending on where you live, correct how personal data has been profiled (as permitted by applicable law, including the privacy law in Connecticut and Minnesota)
  • Right to limit use and disclosure of sensitive personal data (as permitted by applicable law, including the privacy law in California)
  • Right to opt out of the collection of sensitive data and personal data collected through the operation of a voice or facial recognition feature (as permitted by applicable law, including the privacy law in Florida)

How to Exercise Your Rights
To exercise these rights, you can contact us by visiting https://livinglifewithhs.co.uk/contact-us/, by emailing us at livinglifewithhs@gmail.com, or by referring to the contact details at the bottom of this document.

Under certain US state data protection laws, you can designate an authorised agent to make a request on your behalf. We may deny a request from an authorised agent that does not submit proof that they have been validly authorised to act on your behalf in accordance with applicable laws.

Request Verification
Upon receiving your request, we will need to verify your identity to determine you are the same person about whom we have the information in our system. We will only use personal information provided in your request to verify your identity or authority to make the request. However, if we cannot verify your identity from the information already maintained by us, we may request that you provide additional information for the purposes of verifying your identity and for security or fraud-prevention purposes.

If you submit the request through an authorised agent, we may need to collect additional information to verify your identity before processing your request and the agent will need to provide a written and signed permission from you to submit such request on your behalf.

Appeals
Under certain US state data protection laws, if we decline to take action regarding your request, you may appeal our decision by emailing us at livinglifewithhs@gmail.com. We will inform you in writing of any action taken or not taken in response to the appeal, including a written explanation of the reasons for the decisions. If your appeal is denied, you may submit a complaint to your state attorney general.

California ‘Shine The Light’ Law
California Civil Code Section 1798.83, also known as the ‘Shine The Light’ law, permits our users who are California residents to request and obtain from us, once a year and free of charge, information about categories of personal information (if any) we disclosed to third parties for direct marketing purposes and the names and addresses of all third parties with which we shared personal information in the immediately preceding calendar year. If you are a California resident and would like to make such a request, please submit your request in writing to us by using the contact details provided in the section ‘HOW CAN YOU CONTACT US ABOUT THIS NOTICE?‘

13. DO OTHER REGIONS HAVE SPECIFIC PRIVACY RIGHTS?

In Short: You may have additional rights based on the country you reside in.

Australia and New Zealand

We collect and process your personal information under the obligations and conditions set by Australia’s Privacy Act 1988 and New Zealand’s Privacy Act 2020 (Privacy Act).

This Privacy Notice satisfies the notice requirements defined in both Privacy Acts, in particular: what personal information we collect from you, from which sources, for which purposes, and other recipients of your personal information.

If you do not wish to provide the personal information necessary to fulfil their applicable purpose, it may affect our ability to provide our services, in particular:

  • offer you the products or services that you want
  • respond to or help with your requests

At any time, you have the right to request access to or correction of your personal information. You can make such a request by contacting us by using the contact details provided in the section ‘HOW CAN YOU REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?‘

If you believe we are unlawfully processing your personal information, you have the right to submit a complaint about a breach of the Australian Privacy Principles to the Office of the Australian Information Commissioner and a breach of New Zealand’s Privacy Principles to the Office of New Zealand Privacy Commissioner.

Republic of South Africa

At any time, you have the right to request access to or correction of your personal information. You can make such a request by contacting us by using the contact details provided in the section ‘HOW CAN YOU REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?‘

If you are unsatisfied with the manner in which we address any complaint with regard to our processing of personal information, you can contact the office of the regulator, the details of which are:

The Information Regulator (South Africa)
General enquiries: enquiries@inforegulator.org.za
Complaints (complete POPIA/PAIA form 5): PAIAComplaints@inforegulator.org.za & POPIAComplaints@inforegulator.org.za

14. DO WE MAKE UPDATES TO THIS NOTICE?

In Short: Yes, we will update this notice as necessary to stay compliant with relevant laws.

We may update this Privacy Notice from time to time. The updated version will be indicated by an updated ‘Revised’ date at the top of this Privacy Notice. If we make material changes to this Privacy Notice, we may notify you either by prominently posting a notice of such changes or by directly sending you a notification. We will notify app members of material changes in the app or by email. We encourage you to review this Privacy Notice frequently to be informed of how we are protecting your information.

15. HOW CAN YOU CONTACT US ABOUT THIS NOTICE?

If you have questions or comments about this notice, you may contact our Data Protection Officer (DPO) by email at livinglifewithhs@gmail.com, or contact us by post at:

Living Life With HS
Data Protection Officer
30 Main Street,
Watton,
Driffield,
East Riding of Yorkshire,
YO25 9AW,
United Kingdom.

If you are a resident in the United Kingdom, we are the ‘data controller’ of your personal information. Our Data Protection Officer is Stuart Axford, contactable at livinglifewithhs@gmail.com or by post at the address above. Gareth Marshall, Director, is accountable for data protection at the CIC.

16. HOW CAN YOU REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?

Based on the applicable laws of your country or state of residence in the US, you may have the right to request access to the personal information we collect from you, details about how we have processed it, correct inaccuracies, or delete your personal information. You may also have the right to withdraw your consent to our processing of your personal information. These rights may be limited in some circumstances by applicable law. To request to review, update, or delete your personal information, please visit: https://livinglifewithhs.co.uk/contact-us/.

© 2026 Living Life With HS C.I.C · Peer support, not medical advice