Who we are

This is the web site of LAM Action (LAM Action or the Charity), Registered Charity Number 1167610 (England & Wales). Our website address is: https://lamaction.org. LAM Action provides support, information and encouragement to those with lymphangioleiomyomatosis (“LAM”) and their families and carers; advances and supports research into LAM; helps increase awareness about LAM, including symptoms, support and best practices, amongst health professionals; shares research, clinical and patient support experience with other medical, patient and research groups in the UK and overseas; and raises funds to drive these activities.

Our commitment to privacy

LAM Action strives to properly address applicable data privacy requirements. We are the primary data controller for the purposes of processing all personal data that you provide to us.

To better protect your privacy, we provide this notice explaining our privacy practices and the choices you can make about the way your information is collected and used. This notice explains to people who visit our website, contact us, receive our services (including LAMline), donate to us, fundraise for us, are members of LAM Action, subscribe to LAMPost, post on our Facebook page or in our Facebook closed group, LAM Talk UK, or otherwise provide us with information how we handle their personal data.

We may change our privacy policy from time to time, so please check it occasionally to ensure that you’re happy with any changes. Our policy was last updated in March 2019.

Please direct any questions regarding our privacy policy to us using the details shown in “Contact Information” below.

What information do we process?

The personal data we process might include your name, date of birth, email address, IP address (internet protocol address), postal address, telephone number (landline and mobile), gender, job title and nature, and name of your business or organisation.

In some circumstances, we may also collect individuals’ sensitive personal data, particularly health data (e.g., your LAM status or the LAM status of your family member, partner or friend).

How do we collect information from you?

We obtain information about you when you communicate with us, seek support or use our services (such as LAMline), become a member, make a donation, participate in a fundraising event or other campaign, register with us for an event, subscribe to our LAMPost newsletter, complete forms on our website or provide information in other ways. We also may collect information about you from our Facebook page or our Facebook closed group, LAM Talk UK. (Please refer to Facebook’s policies for further information on the way Facebook processes your information.)

We may also get personal information about you from family members, partners, friends or organisations who contact us on your behalf or in relation to you.

How do we use your personal data and on what basis?

We may use and otherwise process the information we collect:

  • To provide you with the services and send you the communications, information or materials that you have requested or that may be of interest to you. This may include information about LAM, LAM Action or LAM research; products that you have ordered, such as holiday cards or other merchandise; information about fundraising and other events; and news about LAM Action;
  • To raise awareness of LAM;
  • For marketing, communications and other promotional literature;
  • In connection with fundraising and donations;
  • To provide you with other information, goods and services;
  • To assess, or seek your views or comments on, the services we provide;
  • To notify you of a change to our services or policies;
  • To carry out our obligations arising from any contracts entered into by you and us;
  • To comply with our legal obligations;
  • For internal administrative purposes (such as our accounting and records).

To elaborate on the above, or give you more specific examples, here are some of the ways in which we commonly use your data:

  • If you are or have been a member of LAM Action, we also may use and otherwise process your personal data to send you information relating to the membership of LAM Action, such as notifying you of our annual meeting and contacting you about renewing your membership.
  • If you have LAM or are the relative, partner or friend of someone who does, we also may use and otherwise process your personal data:
    • to provide you with information and support regarding LAM. This may include facilitating introductions for you to others with LAM or their families; facilitating access to and use of the private email group known as LAMline; inviting you to regional or other meetings of others with LAM; and communicating with you about research or surveys relating to LAM;
    • for purposes of generating statistics, on an anonymous basis, to assess or report on the number of people with LAM or a connection to LAM who are members of LAM Action or who otherwise use our services;
    • with your consent, for purposes of sharing your personal data with scientists, doctors and others who are conducting research or surveys regarding LAM.
  • If you donate to us or participate in our fundraising activities, we also may use and otherwise process your personal data:
    • to process a donation that you have made;
    • to claim Gift Aid on your donations;
    • in connection with promoting the campaign or publicising or assisting you with the fundraising activity.
  • If you subscribe to the private email support group known as LAMline, we also may use and otherwise process your personal data:
    • to provide you with access to LAMline, through which you may communicate via email with other LAMline subscribers (who will see your email address);
    • for purposes of operating LAMline and providing support to people with LAM and their family, partners and friends.
  • If you subscribe to our LAMPost newsletter, we also may use and otherwise process your personal data to provide you with issues of LAMPost and to administer our LAMPost subscription records. We may also use the information to provide additional details about our services only if you have explicitly given us permission to do so. Any such information may be provided by email, post or telephone according to the preferences specified by you. You can change your preferences regarding our communications by contacting us using the details shown in the “Contact information” section below.
  • If you post on our LAM Action Facebook page or in our LAM Action Facebook closed group, LAM Talk UK, we may use and otherwise process your personal data for the purposes of operating the LAM Action Facebook page, facilitating the Facebook closed group, LAM Talk UK, and providing support to people with LAM and their family, partners and friends.
  • We never use the personal data provided to us in ways unrelated to the ones described above without asking you to opt-in to such unrelated uses.

    LAM Action’s legal basis to process your personal data includes processing that is:

    • Necessary for the Charity’s legitimate interests, including those described above and to improve the administration and running of LAM Action;
    • Necessary for compliance with LAM Action’s legal obligations, including UK Charity Law;
    • Necessary for the performance of a contract between you and us;
    • Based on your consent (e.g., for the purpose of subscribing to LAMline), which may subsequently be withdrawn at any time by contacting us using the details shown in “Contact Information” below, without affecting the lawfulness of processing based on consent before its withdrawal;
    • Related to personal data that you share online and therefore make manifestly public (e.g., on the LAM Action Facebook page or in the LAM Action Facebook closed group, LAM Talk UK).

    You are not required, either by contract or statute, to provide us with personal data for processing as described above.

    If you provide LAM Action with data of third parties (such as the name or contact details of a woman with LAM), you must ensure that you notify the relevant individual(s) before sharing their personal information with us by showing them this privacy policy, explaining that their personal information will be processed in accordance with this privacy policy, and obtaining their consent, where appropriate.

    Information relating to employees and researchers

    If you apply for a position with us or are a researcher whose research we may or do support, we also will obtain information about you that you provide to us or, in the case of a researcher, may be provided by your research institution. In these cases, we may use and otherwise process your personal data to:

    • Select people to interview, recruit or support;
    • Carry out our obligations arising from any contracts entered into by you and us;
    • Attend to our legitimate interests, such as administrative matters;
    • Carry out and exercise rights under employment law or other applicable laws.

    Who has access to your personal data?

    As necessary in connection with the purposes described above, LAM Action’s co-ordinator, trustees, some contractors and volunteers (such as co-ordinators of regional groups, LAM Action’s public relations agent and volunteers who provide one-to-one support), and third-party vendors (such as the LAMline service provider, website service provider, payroll processor and other suppliers of goods and services) may access and otherwise process personal data in connection with their responsibilities or contractual obligations and in accordance with our instructions. Some of these recipients may be located in or outside the EEA. We take appropriate steps to ensure that such people are bound to duties of confidentiality and we implement measures, such as standard data protection contractual clauses, to ensure that any transferred personal data remains protected and secure. A copy of these clauses can be obtained by contacting us using the details shown in the “Contact Information” section below.

    We also may, with your consent, share your personal data with scientists, doctors and others who are conducting research or surveys regarding LAM.

    Except as described above, we do not otherwise share, sell or rent information that we collect to any other parties.

    How long do we retain personal data and what are your rights?

    We will retain your personal data only for so long as reasonably necessary for the purposes set out above, in accordance with applicable laws.

    You are entitled, in accordance with applicable law, to request access to, rectification of, erasure of and portability of your personal data, and to object to or request restriction of the processing of your personal data by contacting us using the details shown in “Contact Information” below.

    If you are aware of any inaccuracies in your personal data, you can also inform us in writing using the details shown in “Contact Information” below so that your personal data may be updated or corrected.

    You may lodge a complaint with a supervisory authority if you consider that LAM Action’s processing of your personal data infringes applicable law.

    Information about visits to our website

    We gather information about our website. For each visitor to our web page, our web server automatically records standard web server logging information such as the file requested, the date and time of the request, the internet address or domain name (where possible) of the computer requesting the file, the type of web browser that the visitor is using and the address of the web page that referred the visitor to our website (where possible). This information is used in an aggregate manner to analyse usage of our website and make improvements to it.  It is not used to track the behaviour of individual visitors in an identifiable manner.

    Browser cookies

    Our website uses cookies to provide you with a good experience when you browse our website and also allows us to improve our site. A cookie is a small file of letters and numbers that we store on your browser or the hard drive of your computer if you agree. Cookies contain information that is transferred to your computer’s hard drive.

    We may use the following cookies:

    • Functionality cookies: these are cookies that enable the operation of our website. They include, for example, cookies that enable you to log into secure areas of our website.
    • Performance cookies: these allow us to record the number of visitors and to see how visitors navigate our website. This helps us to improve the way our website works, for example, by ensuring that users are finding what they are looking for easily.
    • Advertising cookies: we may rely upon cookies created by our advertising suppliers to track the effectiveness of our advertising campaigns. We do not have access to the content of such cookies, but we are provided with aggregated reports on visitors.

    You can block cookies by activating the setting on your browser that allows you to refuse the setting of some or all cookies. Please note that by deleting our cookies or disabling future cookies you may not be able to access certain areas or features of our site and the site will not work as well as if you had permitted our use of cookies.

    Disclosures required or permitted by law

    Regardless of any other provisions in this Privacy Policy, LAM Action may disclose or otherwise process personal data as may be required or permitted by law or required for the purposes of any regulatory audit to which the Charity may be subject from time to time.

    Contact information

    If you have any questions, comments or concerns about our privacy practices, or if you wish to issue a request to exercise your rights where applicable by law, please contact us at jill.pateman@office.lamaction.org and provide your name and contact information along with the request. Alternatively, enquiries may be posted to:

    LAM Action
    PO Box 10933
    NG24 9QG, England