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Privacy

Long Covid Kids – Privacy Notice

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About this notice

This notice explains what personal information Long Covid Kids (LCK) uses, why we use it and your rights. We want it to be clear and easy to understand. It was last updated on 26th October 2026.

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Who we are. Long Covid Kids & Friends ("Long Covid Kids", "LCK", "we") is a registered charity in England & Wales (1196170) and Scotland (SC052424). We are the data controller for the personal information described in this notice.

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  • Registered address: Lytchett House, 13 Freeland Park, Wareham Road, Poole, Dorset, BH16 6FA

  • Data Protection Lead: Sammie McFarland, smcfarland@longcovidkids.org

  • ICO registration number: ZB375283

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What information do we use?

The information we use depends on how you are involved with LCK. Most of it you give us directly. Some comes from other organisations, such as JustGiving when you donate and agree to share your details with us, and some is collected automatically when you use our website.

Signing up for updates or filling in our preference form

Name, email address, the topics you want to hear about, and the groups you tell us you belong to (for example parent or carer, young person, professional)

Contacting us

Name, contact details and anything you choose to tell us

Events, activities and LCK Connected sessions

Name, email, the session booked, and for young people their age group and a parent or carer's contact details

Members area

Login email, password (stored securely by Wix) and profile details

Shop orders

Name, delivery address, email and order history. Card details are handled by the payment provider, not stored by us

Donating

Your name, email and donation details, if you agree to JustGiving sharing them with us

Volunteering, research and campaigns

Details you give us when you volunteer, take part in research, surveys or campaigns, or work with us professionally

Stories, photos and feedback

Photos, videos, stories or feedback provided for an agreed purpose (see Photos, videos and stories)

Keeping people safe

Information needed to keep children and young people safe

Our website

IP address, device and browser information and pages visited, through cookies (see Cookies)

Some of this may include health, disability or other sensitive information where it is relevant to our work with you (see Health and other sensitive information).

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Health and other sensitive information

Information about health or disability is "special category" data, which the law protects more strongly. We only use it where it is relevant to our work with you, and we identify an additional legal condition for it.

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On our preference form, you can choose to tell us whether you, or someone you care for, is living with Long Covid or another prolonged, energy-limiting illness. This is optional, and the form works fully if you skip it. If you answer, we ask for your explicit consent, and we:

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  • use it only to send you relevant information, support and opportunities, and to understand our community in summary form

  • don't store or use it unless you have ticked the consent box

  • keep a record of when you gave consent

  • never share it outside LCK, apart from the services that store it for us

  • don't use it to make decisions that significantly affect you

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You can withdraw consent at any time by emailing info@longcovidkids.org. We will then delete the health information from your record. Withdrawing doesn't affect anything we did before, and it won't change the newsletters you receive.

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In other activities such as LCK Connected sessions, research or sharing your story, we explain at the time what health information we need and why, and which legal condition applies.

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Why do we use it?

We only use personal information where we have a valid reason, and the law requires a lawful basis for each use. These are ours:

Provide activities, information and support, and answer enquiries

Legitimate interests; contract where you book or buy something

Work safely with children, young people and families

Legitimate interests; legal obligation where safeguarding law applies

Send the newsletters you signed up for

Consent

Tailor emails to the topics and groups you choose

Consent

Record health information you choose to share on our preference form

Consent, plus explicit consent as the special category condition

Process shop orders and event or session bookings

Contract

Process donations and keep financial records

Contract; legal obligation

Manage volunteers, staff, trustees, supporters and professional relationships

Legitimate interests; contract or legal obligation for staff

Carry out research, campaigning and policy work

Consent or legitimate interests, depending on the activity

Use photos, videos and stories

Consent

Run and improve our website and services

Legitimate interests; consent for non-essential cookies

Meet our legal, safeguarding and regulatory responsibilities

Legal obligation

Where we rely on legitimate interests, we have checked that our use is necessary and fair, and does not override your rights. You can object at any time (see Your rights).

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Emails and your preferences

We only send newsletters and other marketing emails to people who have subscribed, and every one includes an unsubscribe link. If you book an event or session, buy from our shop or contact us, we will also send you service emails about that booking, order or enquiry, such as confirmations and reminders. These are not marketing.

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  • Our general newsletter shares news, resources, opportunities and important updates from across our work.

  • Our young people's newsletter shares news, activities and opportunities written for children and young people.

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You choose which newsletters you receive when you sign up. You can change this at any time by filling in our preference form again (your latest answers replace your earlier ones), or unsubscribe from everything using the link in any email or by contacting us.

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Tailoring what we send you. On our preference form you can tell us which topics interest you and which groups you belong to (for example parent or carer, young person, professional). We may use these answers, now or in the future, to make our emails more relevant to you. For example, we might send some emails only to people interested in a particular topic, or choose which stories and opportunities appear in your newsletter. If you have given explicit consent to share health information, we may also use it to send you relevant support (see Health and other sensitive information).

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We only use the information you have chosen to give us. This is simple sorting, not automated decision-making with legal or similar effects. Telling us your preferences is optional: if you don't, you will still receive the newsletters you signed up for. You can ask us to stop tailoring emails to you at any time, and we will.

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Our email system also records whether emails are opened and links clicked, so we can improve them.

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Photos, videos and stories

We only use photos, videos, stories or feedback for the purpose agreed with you when you gave them, such as our website, social media, campaigns or evidence to policymakers. For children and young people, we ask a parent or carer to agree as well [confirm age threshold].

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You can ask us to stop using your photo, video or story at any time. We will remove it from anything we control, although we may not be able to recall material that has already been printed or shared by others.

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Children and young people

Children and young people have the same data protection rights as adults. Because they are central to LCK's work, we take particular care with their information and explain clearly what we collect and why.

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  • If you are under 13, please ask a parent or carer to sign up or fill in forms for you.

  • If you are 13 to 17, you can sign up to our emails yourself. We will only send you information suitable for young people, and we encourage you to tell a parent or carer.

  • LCK Connected sessions are for young people aged 6 to 17 and need a parent or carer's registration and contact details.

  • We keep children's information only as long as we need it, and never use it for fundraising.

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Where we collect information directly from children and young people, we give them privacy information in a form that is appropriate and understandable to them [link to young people's version, if published].

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If anyone shares something that raises a safeguarding concern, we may need to pass it to the relevant authorities without consent. See our Safeguarding page.

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Who do we share information with?

We do not sell personal information. We only share it where there is a proper reason. Where another organisation processes information for LCK, we make sure appropriate data protection arrangements are in place.

Wix.com

Hosts our website, forms, shop, bookings, members area, contacts and email newsletters

JustGiving

Processes online donations and Gift Aid. JustGiving is also a controller for your donor account

Payment providers used by our shop

Process card payments

Zoom

Hosts LCK Connected and other online sessions

Professional advisers

For example accountants, auditors or legal advisers, where needed

Research or project partners

Only where agreed with you, or where we have explained this at the time

Police, social services or other statutory agencies

Where safeguarding or the law requires it

When we share research or survey opportunities, we pass on the opportunity, not your details, unless you agree.

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Transfers outside the UK. Some of our service providers, including Wix, store data outside the UK. Where they do, the transfer is protected by UK-approved safeguards, such as UK adequacy regulations or the International Data Transfer Addendum.

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How long do we keep it?

We keep personal information only as long as we need it for the purpose it was collected for, or where we must keep it for legal, safeguarding, financial or regulatory reasons. Our full retention periods are recorded in LCK's internal Data Protection Register. The main ones are:

Email subscribers and preferences

Until you unsubscribe; then just your email address on a suppression list so we don't email you again

Health information from the preference form, and the record of consent

Until you withdraw consent or unsubscribe

Subscribers who haven't opened an email

Reviewed every [24] months

Shop orders, donations and financial records

6 years after the end of the financial year (HMRC requirement)

Event and session bookings

[2] years after the booking

Enquiries

[2] years after we last heard from you

Photos, videos and stories

Until you ask us to stop using them

Safeguarding records

As long as safeguarding guidance requires

Keeping information safe

We take reasonable steps to keep personal information secure and limit access to the staff and volunteers who need it for their role. Most of our records are stored on Wix's secure servers.

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If a personal data breach occurs, we assess it, record it and report it to the Information Commissioner's Office (ICO), and to the people affected, where the law requires us to.

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Cookies

Our website uses cookies. Essential cookies make the site, shop and members area work, and don't need your consent. Other cookies, such as analytics, are only set if you accept them in our cookie banner. You can change your choice at any time through the cookie settings link at the bottom of every page.

Your rights

Depending on the circumstances, you have the right to:

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  • ask for a copy of your personal information

  • ask us to correct information that is wrong or incomplete

  • ask us to delete it, or restrict how we use it

  • object to some uses of your information, including any based on legitimate interests

  • withdraw consent at any time where we rely on consent, without affecting what we did before

  • receive your information in a portable format, where we rely on consent or a contract

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To use any of these rights, or to ask a question about how we use your information, contact our Data Protection Lead at. We will reply within one month, and there is no charge.

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If you are unhappy

Please contact us first if you have a concern, so we can try to put it right. You also have the right to complain to the Information Commissioner's Office (ICO), the UK's data protection regulator: ico.org.uk/make-a-complaint or 0303 123 1113.

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Changes to this notice

We may update this notice when our work, or the way we use information, changes. The latest version will always be on our website. If we make significant changes, we will tell subscribers by email.

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