Privacy

We want everyone who comes into contact with us to feel confident that we protect their personal information

Privacy Notice

We want everyone who supports us, comes to us for support or contacts us to feel confident and comfortable with how we look after their personal information.

Where we ask you to provide us with any information by which you can be identified, you can be assured that it will only be used in accordance with this privacy statement, and in line with UK data protection law which includes but may not be limited to the Data Protection Act 2018, the UK General Data Protection Regulations (UK GDPR) and the Privacy and Electronic Communications Regulation (PECR).

This Privacy Notice explains how we collect, use and store personal information. Personal information means any information that could identify you.

The ALK Positive UK Privacy Notice may change, so please check from time to time. This version was updated on 22 April 2026.

1. Who we are

We are ALK Positive Lung Cancer (UK), a registered charity in England and Scotland. We are committed to protecting your personal information and making every effort to ensure that your personal information is processed in a fair, open and transparent manner.

We are a "data controller" for the purposes of the Data Protection Act 2018 and the UK General Data Protection Regulation ("Data Protection Law"). This means that we are responsible for the processing of your personal information.

Our Chief Executive Officer is the Data Protection Officer

2. How we collect information about you.

Service users/members

We collect information from you when you:

Register for the Support Group
Register for The ALK Register
Use our website
Contact us using the website
Contact us by email
Contact us by post
Book a place at or attend one of our events
Make a donation to our bank account
Fundraise using a funding raising platform, such a Just Giving and Enthuse.
Purchase something from the online shop
Complete a survey form
Provide photographs
Provide personal stories

We may also receive information about you when someone you know completes any of the above on your behalf.

Staff/applicants/trustees

We collect information about you:

Directly from you during recruitment, and during your engagement/time working with us.
From agencies and referees (with your knowledge)
From pre-employment screening, such as right to work
From internal systems (e.g. HR)

Volunteers/regional ambassadors

We collect information about you when you:

Contact us by email expressing interest
Volunteer with us

Donors/supporters/event attendees

When you make a donation
When you book or attend an event

3. Information we collect and how we use it.

The personal information we collect about you will be used to advance the Charity’s aims of supporting and empowering patients, advocating nationally for best practice, campaigning for early diagnosis and raising the awareness of lung cancer amongst non-smokers. We ask all individuals to ensure data is accurate when you provide it, and please update us if anything changes.

We collect personal information when you –

your name
email address
postal address
telephone number
date of diagnosis
stage at diagnosis
age at diagnosis
hospital where treated

We may use your contact information to communicate with you about events, activities, charity news, ALK-positive news, to send a Newsletter and to invite you to take part in surveys if you have told us that you would like to hear about these things. We use information about your diagnosis anonymously for the purpose of advocating and campaigning for best practice and early diagnosis.

Visit the website

We collect information on your website usage using tracking software - pages visited, IP address, browser, location and device used.

Name
Telephone number
Email address
Contents of the message

We use your contact information to communicate with you.

Name
Email address
Contents of the email

We use your contact information to communicate with you.

Name
Address
Contents of the letter

We use your contact information to communicate with you.

Book a place at an event -

Name
Address
Telephone number
Email address

We use your contact information to communicate with you and manage your booking.

Make a donation via our website or to our bank account -

Name
Account number
Sort number

We use your contact information to communicate with you, to process your donation, to make Gift Aid claims and to comply with the Charities (Protection and Social Investment) Act 2016 and follow the recommendations of the official regulator of charities, the Charity Commission, which require us to identify and verify the identity of supporters who make major gifts so we can assess any risks associated with accepting their donations.

Fundraise, using a platform such as Just Giving and Enthuse -

Name

We use your name to record the amount raised.

Make a purchase from our online shop -

Name
Address
Email address
Telephone number

We use your contact information to communicate with you and to provide the items purchased.

Completing a Survey Form -

Name
email address
Information provided in the survey

We use your contact information to communicate with you. We use the information you provide in the survey about your diagnosis, treatment and care anonymously for the purpose of advocating and campaigning for best practice and early diagnosis.

Photographs

We take photographs at events, including the conference and regional lunches, invite fundraisers to provide photographs, invite members to provide photographs for campaigns and for social media and we use photographs posted on the charity’s Facebook Support Group. We obtain the consent of members before using any of their photographs for publicity purposes.

Personal Stories

We invite members to provide their personal stories and obtain their consent to using the stories on the website, in Newsletters, social media and for publicity purposes.

xiii. Apply for a job or work with us

Personal details and contact information.
Application, CV, and interview information; reference, employment history, qualifications.
Contract terms, job role, pay/fees, benefits, working time, leave and absence, performance and supervision records, disciplinary and grievance records, training records.
Next of kin and emergency contacts.
Right to work, and other compliance records.
Special category data (where necessary) - health/occupation health information (e.g. reasonable adjustments), and equality, diversity and inclusion data may be provided voluntarily.

We use your data to keep a record of your employment and to employ you legally and safely.

Volunteer with us

Personal details and contact information.
Information about how you volunteer with us

We use your information to keep in touch with you and keep a record of your volunteering.

4. Our Lawful Basis

Service Users/Members

Legitimate Interest is our primary basis for the delivery of our services, including participation and evaluation.

We rely on Consent for optional activities and processing such as certain participation opportunities, recordings/photography, case studies, surveys or where required by law for specific communications.

Where we process health data (ALK positive diagnosis etc) we rely on Article 9 Substantial public interest – Support for individuals with a particular health condition.

Staff/applicants/trustees

We rely on Contract and Legitimate Interests for recruitment and onboarding of staff and trustees, and to administer employment and engagement.

Legal Obligation to meet legal obligations (e.g. HMRC, right to work, health and safety).

Legitimate Interest to manage performance, supervision, learning and development, security and IT systems.

For special category data - employment and social protection law; substantial public interest, equality monitoring; occupation health; and where appropriate, consent.

Donors/Supporters/Event Attendees

We rely on Consent for email marketing to individuals where required by PECR.

Legitimate Interests for soft opt-in related email communications when you have expressed an interest.

Contract or legitimate interests to administer event bookings.

Legal Obligation for Gift Aid and financial record keeping.

5. Sharing your information

We may share your data with other partner organisations, but only where you have given us your consent.

Some information is stored in a password-protect database on a password-protected computer at the registered office of the Charity. It is available only to the Chair and Secretary of the Charity. We are in the process of transferring the database to a cloud-based platform where it will be available to the Treasurer and Manager.

We also use the following 3rd party organisations to store personal information–

Survey Monkey – membership questionnaires and surveys, accessed by the Secretary and Administrative Assistant
Mail Chimp – emails to members, accessed by the Secretary and Manager
Xero – accountancy system, accessed by Secretary, Treasurer and Finance Assistant
Google Share – storage of personal information, accessed by the Chair, Secretary, Treasurer and Manager
Zee Maps – location of members, accessed by the Secretary, Manager and Administrative Assistant

These platforms are hosted in the USA, so the information you provide to us is initially stored there. The contract we have with these providers ensures their practices comply with UK data protection law and we regularly delete data from this system.

We never provide any identifiable personal information to researchers or pharmaceutical companies. We do provide anonymised data.

6. Legal disclosure

We may disclose your information if required to do so by law (for example, to comply with applicable laws, regulations and codes of practice or in response to a valid request from a competent authority.

7. Keeping your information safe

We take looking after your information very seriously. We've implemented appropriate physical, technical and organisational measures to protect the personal information we have under our control, both on and off-line, from improper access, use, alteration, destruction and loss.

Our website contains links to other sites. While we try to link only to sites that share our high standards and respect for privacy, we are not responsible for the content, or the privacy practices employed by other sites.

8. How long we hold your information for

We only keep it as long as is reasonable and necessary for the relevant activity, which may be to fulfil statutory obligations (for example, the collection of Gift Aid). We have a retention policy which outlines how long your personal data will be kept.

Information provided for a specific event will be deleted after the event.

Some personal information, e.g. age at diagnosis, will be retained indefinitely as it remains relevant to our advocacy and campaigning workhowever your personal information will not be held alongside this information indefinitely. If you have any questions about how long we will keep your data, please get in touch.

9. Your rights

You have various rights in respect of the personal information we hold about you – these are set out in more detail below. If you wish to exercise any of these rights or make a complaint, you can do so by contacting us using the website, email to hello@alkpositive.org.uk, telephoning 01600 483004 or writing to the registered office of the charity (see website and Charity Commission). We will acknowledge your complaint within 30 days.

If you are dissatisfied with our response to your complaint, you can also make a complaint to the data protection supervisory authority, the Information Commissioner's Office, https://ico.org.uk/

Access to your personal information: You have the right to request access to a copy of the personal information that we hold about you, along with information on what personal information we use, why we use it, who we share it with, how long we keep it for and whether it has been used for any automated decision making. You can make a request for access free of charge. You may be required to provide us with evidence of your identity.
Right to object: You can object to our processing of your personal information where we are relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground. You also have the right to object where we are processing your personal information for direct marketing purposes. Please contact us as noted above, providing details of your objection.
Consent: If you have given us your consent to use personal information (for example, for marketing), you can withdraw your consent at any time.
Rectification: You can ask us to change or complete any inaccurate or incomplete personal information held about you.
Erasure: You can ask us to delete your personal information where it is no longer necessary for us to use it, or you have withdrawn consent, or where we have no lawful basis for keeping it.
Portability: You can ask us to provide you or a third party with some of the personal information that we hold about you in a structured, commonly used, electronic form, so it can be easily transferred.
Restriction: You can ask us to restrict the personal information we use about you where you have asked for it to be erased or where you have objected to our use of it.

No automated decision making: Automated decision-making takes place when an electronic system uses personal information to make a decision without human intervention. You have the right not to be subject to automated decisions that will create legal effects or have a similar significant impact on you, unless you have given us your consent, it is necessary for a contract between you and us or is otherwise permitted by law. You also have certain rights to challenge decisions made about you. We do not currently carry out any automated decision-making.
Please note, some of these rights only apply in certain circumstances, where one of your rights does not apply, we will communicate the reason to you.

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