- About LAM
- About LAM Action
- For Medical Professionals
- For Patients & Their Families
- Get Involved
This is the web site of LAM Action, Registered Charity Number 1167610 (England & Wales).
Our postal address is:
PO Box 10933
NG24 9QG, England
LAM Action, UK registered charity number 1167610 (LAM Action or the Charity), 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.
Who are we?
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.
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 elaborate on the above, or give you more specific examples, here are some of the ways in which we commonly use your data:
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:
You are not required, either by contract or statute, to provide us with personal data for processing as described above.
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:
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 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.
We may use the following cookies:
Disclosures required or permitted by law
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 firstname.lastname@example.org and provide your name and contact information along with the request. Alternatively, enquiries may be posted to:
PO Box 10933
NG24 9QG, England