These terms apply to your use of the ELF Connect platform. Please read them carefully before you create an account, as they set out important information about your and our rights and obligations.
You must agree to these terms before you create your account.
You must be at least 18 years old to create an account on the ELF Connect platform.
Your attention is particularly drawn to clause 17 (Our responsibility to you) of these terms, which sets out important limits and exclusions of our liability to you.
We are European Lung Foundation (ELF), a company limited by guarantee registered in England and Wales under company number: 05718525. Our registered office is at: 442 Glossop Road, Sheffield, S10 2PX.
You can contact us by sending an email to info@europeanlung.org.
3.1 Any reference to ‘we’, ‘us’ or ‘our’ in these terms is to European Lung Foundation (ELF), and any reference to ‘you’ or ‘your’ is to the person creating an account on the ELF Connect platform.
3.2 We may make changes to these terms at any time. However, the terms which apply to your use of the ELF Connect platform will be those in force at the time youcreated your account, unless we notify you of changes in accordance with these terms.
3.3 Please print out or save a copy of these terms and any emails from us for yourrecords, as we will not save or file a copy for you. These terms are only available in English.
3.4 Your use of our website is governed by our Website Terms of Use, which are separate from these terms and available at [insert link].
4.1 To access the ELF Connect platform, you must create an account by completing the registration process.
4.2 By completing the registration process and accepting these terms, you are entering into a legally binding contract with us for access to and use of the ELF Connect platform.
4.3 We will send you an email confirming that your account has been created. Your account gives you access to the digital content and services available on the ELF Connect platform.
4.4 We reserve the right to refuse to create an account for you or to suspend or terminate your account at any time if we reasonably believe that you are in breach of these terms, you are under 18, or for any other reason at our discretion. If we refuse, suspend or terminate your account, we will notify you by email using the details you provided during registration.
5.1 We cannot guarantee that the ELF Connect platform or any digital content will be available at any given time, or that access will be uninterrupted, error free or secure. For example, access may be temporarily unavailable while we carry out maintenance or for other technical reasons.
5.2 In certain circumstances beyond our reasonable control, for example where there has been a change in law, we may need to stop providing the ELF Connect platform or certain digital content. If this happens, we will notify you by email.
If you would like to make any changes to your account details, you can do so by logging into your account or by contacting us.
7 Descriptions and technical requirements
7.1 Descriptions of the digital content and services available on the ELF Connect platform are set out on the platform.
7.2 To access and use the ELF Connect platform, your device needs to comply with the minimum technical requirements set out on the platform. Please read these carefully as you are responsible for making sure that your device meets these requirements.
7.3 You will need internet access to use the ELF Connect platform and you are responsible for any charges you may incur in connection with your internet access.
7.4 We are not liable to you if you are unable to access or use the ELF Connect platform due to a poor internet connection, because your device does not meet the minimum technical requirements, or for any other reason outside of our reasonable control.
8 AI-assisted search function
8.1 The ELF Connect platform includes a search function which enables you to search our library of information provided by ELF and resources shared from trusted partners. This search function is supported by an artificial intelligence (AI) instance.
8.2 When you use the search function, the queries you submit are processed by an AI instance in order to identify and present relevant resources from our library. The search queries you submit are not used to train the AI instance.
8.3 Search results are generated by the AI instance using ELF’s curated library of resources. The AI instance retrieves and presents existing resources from that library rather than creating original content, and the results are not individually reviewed by ELF before they are presented to you.
8.4 Because search results are generated by an AI instance, they may not be comprehensive, accurate or up to date, and the selection or order of results may vary. Further information about the limitations of AI-generated search results, and the basis on which they are provided, is set out in the clause below headed ‘Our responsibility to you’.
9 Community feature
9.1 The ELF Connect platform includes a community feature that allow users to interact with each other (the ‘Community Feature’). Your use of the Community Feature is subject to the rules set out in this clause and in the ELF Connect Community Guide, which is available at https://elfconnect.eu/community-guidelines/.
9.2 Users registered as ELF representatives or healthcare professionals (‘Professionals’) may post content, create polls, upload images, reply to posts, comment and react (such as liking content). Users registered as patients (‘Patients’) may view and comment on posts, reply to comments and react to content, but may not create original posts or polls.
9.3 You are solely responsible for any content you post, upload or share through the Community Feature (‘User Content’). By posting User Content, you grant us a non-exclusive, royalty-free, worldwide licence to use, display, reproduce and distribute such content in connection with the operation of the ELF Connect platform. You should not share any personal information (whether about yourself or others) that you do not wish to be publicly accessible.
9.4 You may be required to complete certain profile fields when registering for the Community Feature. You are responsible for ensuring that the information you provide is accurate and up to date. Certain profile information may be visible to other users, as indicated on the platform.
9.5 You may choose a nickname or display name for use within the Community Feature. Your chosen name must not impersonate another person, be offensive, misleading or otherwise inappropriate. We reserve the right to require you to change your display name if it breaches these requirements.
9.6 When posting, replying, commenting or reacting to content, you must comply with the rules set out in this clause and the Community Guide. All contributions must be respectful, relevant and lawful.
9.7 The ELF Connect platform may include group features that allow users to join or create groups based on shared interests or conditions. Group membership and participation are subject to these terms and any additional group rules.
9.8 Users may participate in polls or surveys made available through the Community Feature. Your responses may be aggregated and used by ELF for research or platform improvement purposes in accordance with our Privacy Policy.
9.9 If private or direct messaging functionality is made available on the platform, such messages are subject to the same rules as public posts. We reserve the right to review private messages if we receive a report or have reason to believe that a breach of these terms has occurred.
9.10 If you believe that any User Content or user behaviour breaches these terms, you may report it using the reporting functionality on the platform or by contacting us. We will review all reports and take appropriate action in our discretion.
9.11 We reserve the right to moderate, edit, move or remove any User Content at any time and without notice if we consider that it breaches these terms, the Community Guide or is otherwise inappropriate. We are not obliged to give reasons for any moderation decision.
9.12 In addition to our rights under clause 4, we may suspend or permanently remove your access to the Community Feature if you breach these terms or the Community Guide. Serious or repeated breaches may result in permanent removal from the platform.
9.13 You must not post, upload or share any content or engage in any behaviour that:
9.13.1 is unlawful, harmful, threatening, abusive, harassing, defamatory, obscene or otherwise objectionable;
9.13.2 infringes any intellectual property rights or other rights of any third party;
9.13.3 contains personal data of another person without their consent;
9.13.4 is spam, unsolicited advertising or promotional material;
9.13.5 impersonates any person or entity or misrepresents your affiliation with any person or entity; or
9.13.6 contains viruses, malware or any other harmful code.
9.14 You must not post or share content that you know or ought reasonably to know is false, misleading or unsubstantiated medical information. This includes claims about treatments, cures or medical products that are not supported by reliable evidence.
9.15 The Community Feature is intended for peer support and information sharing only. You must not provide, and must not rely upon, medical advice from other users. Always consult a qualified healthcare professional for medical advice relating to your condition or treatment.
9.16 The ELF Connect platform and its Community Feature are not intended for use in medical emergencies. If you are experiencing a medical emergency, please contact your local emergency services immediately.
9.17 If you become aware of any content or behaviour that raises safeguarding concerns, including risk of harm to any person, please report it immediately using the platform’s reporting functionality or by contacting us directly. We may share information with relevant authorities where we consider it necessary to protect the safety of any person.
10 Permission to use the ELF Connect platform and digital content
10.1 We give you a licence to access and use the ELF Connect platform and the digital content available on it, provided you follow all of the rules in these terms. The licence starts when your account is created.
10.2 The licence is for your personal use only. You must not use the ELF Connect platform or any digital content for commercial, business or resale purposes unless we have given you prior written permission to do so.
10.3 You do not own the digital content available on the ELF Connect platform or any of its contents but you may use it as set out in these terms. You are not allowed to pretend that the digital content is your own or make it available to others.
10.4 You must not conceal, change or remove any markings which show who owns the digital content, such as copyright (©), registered trade mark (®) or unregistered trademark (™) markings, or try to circumvent any digital rights management or technical protection measures put in place to prevent you from using the digital content in a way that you are not allowed to.
10.5 If you do not comply with any term in this clause 9, we have the right to suspend or terminate your account immediately by sending an email to the address you provided when you registered.
10.6 If we suspend or terminate your account in accordance with clause 9.5:
10.6.1 we may seek to recover reasonable compensation from you according to law to cover losses resulting directly from your breach of this clause 9;
10.6.2 you must immediately stop using the ELF Connect platform and the digital content;
10.6.3 we may remotely block your access to the ELF Connect platform and the digital content;
10.6.4 you must delete or remove any digital content from the ELF Connect platform from any devices; and
10.6.5 we may delete or suspend access to your account.
The ELF Connect platform was designed for use by users across the European Union and the UK. We cannot guarantee that the digital content is appropriate or will be available for use in locations outside of these areas. If you use the ELF Connect platform outside of the EU or UK, you are responsible for ensuring that you comply with any local laws.
12 How to access the ELF Connect platform
12.1 You can access the ELF Connect platform by logging into your account at [insert ELF Connect URL] or through our mobile application (if available).
12.2 You are responsible for maintaining the confidentiality of your account login details and for all activities that occur under your account.
12.3 You must notify us immediately if you become aware of any unauthorised use of your account or any other breach of security.
12.4 If you are having trouble accessing the ELF Connect platform or any digital content, please email us at info@europeanlung.org.
12.5 Instructions on how to use the ELF Connect platform and the digital content can be found on the platform.
13 Your right to cancel and close your account
13.1 You may close your account at any time by contacting us.
13.2 To close your account, please email us at info@europeanlung.org .
14 Faulty digital content and your consumer rights
14.1 The digital content that we provide to you must be as described, fit for purpose and of satisfactory quality.
14.2 We are under a legal duty to supply digital content that is in conformity with ourcontract with you.
14.3 If any digital content on the ELF Connect platform is faulty, you are entitled to a repair or a replacement.
14.4 If you can show that a fault in the digital content has damaged your device and we have not used reasonable care and skill, you may be entitled to a repair or compensation.
14.5 This is a summary of some of your key rights. They are in addition to yourcancellation rights set out in clause 13 above. For more detailed information on yourrights, visit the Citizens Advice website at www.citizensadvice.org.uk or call 0808 223 1133.
14.6 If there is a problem with the ELF Connect platform or any digital content, please contact us as soon as reasonably possible.
We are not liable to you if we fail to comply with these terms because of circumstances beyond our reasonable control.
16.1 If we breach these terms or are negligent, we are liable to you for foreseeable loss or damage that you suffer as a result. By ‘foreseeable’ we mean that, at the time the contract was made, it was either clear that such loss or damage would occur or you and we both knew that it might reasonably occur, as a result of something we did (or failed to do).
16.2 We are not liable to you for any loss or damage that was not foreseeable, any loss or damage not caused by our breach or negligence, or any business loss or damage.
16.3 The search function on the ELF Connect platform is supported by an AI instance, as described in the clause above headed ‘AI-assisted search function’. Any results generated or presented by the AI instance are provided for general information purposes only and do not constitute medical advice. Such results may not be complete, accurate or up to date and should not be relied upon as a substitute for professional medical advice. You should always seek the advice of a suitably qualified healthcare professional in relation to any medical condition, symptoms or treatment.
16.4 Subject to the provisions of this clause and to any mandatory rights you may have under applicable consumer protection law, we are not liable for any loss or damage arising from your reliance on AI-generated search results.
16.5 Nothing in these terms excludes or limits our liability for any death or personal injury caused by our negligence, liability for fraud or fraudulent misrepresentation, or any other liability that the law does not allow us to exclude or limit.
Any personal information that you provide to us will be dealt with in line with ourPrivacy Policy available at [insert link to ELF privacy policy], which explains what information we collect and hold about you, and how we collect, store, use and share such information.
No one other than us or you has any right to enforce any of these terms.
19.1 We may transfer our rights under these terms to another organisation without your consent, but we will notify you of the transfer and make sure that your rights are not adversely affected as a result.
19.2 You are not allowed to transfer your rights under these terms to anyone without our prior written consent.
20.1 If you are unhappy with us or the ELF Connect platform, please contact us at info@europeanlung.org.
20.2 If your complaint cannot be resolved in accordance with our Complaint Handling Policy or you are unhappy with the outcome, you may want to submit your complaint to an accredited provider of alternative dispute resolution (ADR) services, details of which can be found on the Chartered Trading Standards Institute website. ADR is a process for resolving disputes that does not involve going to court. If you do not wish to use ADR or are unhappy with the outcome of ADR, you can still bring court proceedings.
21 Governing law and jurisdiction
21.1 This Agreement and any dispute or claim arising out of or in connection with it or its subject matter or formation (including non-contractual disputes or claims) shall be governed by and construed in accordance with the law of England and Wales (as it applies in England).
21.2 Each Party irrevocably agrees that the courts with exclusive jurisdiction to settle any dispute or claim arising out of or in connection with this Agreement or its subject matter or formation (including non-contractual disputes or claims) shall be the law of England and Wales.
21.3 If you are resident in the European Union, nothing in this clause deprives you of the protection of any mandatory provisions of the law of your country of residence, and you may bring proceedings in respect of these terms in the courts of your country of residence where applicable consumer protection law so permits. More generally, if you are resident outside England and Wales, you will retain the benefit of any mandatory protections given to you by the law of the country in which you are resident.
This Privacy Notice explains how the European Lung Foundation (ELF) collects, uses, stores and protects your personal data when you use the ELF Connect platform. ELF Connect is a digital platform designed to form a bridge between patients and healthcare professionals to improve care and outcomes for patients with respiratory conditions.
ELF is the data controller for the personal data collected through ELF Connect. This means we are responsible for deciding how we hold and use your personal information. We are committed to protecting your privacy and complying with the EU General Data Protection Regulation (GDPR) and the UK General Data Protection Regulation (UK GDPR).
To understand how your personal information will be treated, please read the following policy. This policy may change from time to time so please refer to it periodically. In addition, we will where applicable send you a notice of any such change.
What is ELF Connect and what features does it offer?
ELF Connect provides registered users with the following features:
(a) Access to evidence-based resources: Users can access a library of information about specific respiratory conditions. This library includes resources provided by ELF and resources shared from trusted partners.
(b) Search functionality: Users can search the platform resources using a search function supported by an AI instance. Please note that the questions you submit through the search function are not used to train the AI instance.
(c) ‘Ask a Question’ feature: Users can submit questions to a panel of experts using the ‘submit a question to an expert’ button. If your question has previously been asked at an in-person conference and answered by the expert panel, you will receive that previous response with an explanation that the question was asked before. If your question is new, it will be submitted to ELF (along with your user ID), who will ask the expert panel offline and then send the response to you as a direct message within the platform.
(d) Community feature: ELF Connect includes a community feature where users can interact with each other (the Community Feature). ELF and healthcare professionals can create posts, add images, polls and text, comment, reply and like content. Patients can view posts, comment on posts, reply to comments and like content, but cannot create new posts. Your use of the Community Feature is subject to the ELF Connect Community Guide which can be accessed here: https://elfconnect.eu/community-guidelines/. Personal data collected through the Community Feature may include:
(i) User-generated content: Posts, replies, comments, reactions (such as likes), poll responses and any other content you submit through the Community Feature.
(ii) Profile information: Profile fields you complete, your display name or nickname, and your profile visibility settings.
(iii) Group membership: Information about any groups you join or participate in within the community.
(iv) Private or direct messages: If enabled, any messages you send or receive through the platform’s messaging functionality.
(v) Reports: Information you provide when reporting content or other users.
What personal data do we collect?
ELF Connect may collect or process the following types of personal data:
(a) Account and profile data: Account registration data, email address, username, display name or nickname, user role (for example, patient, carer, healthcare professional, ELF representative or supporter), condition interest or group membership (where selected), country, region and language preference (where selected), profile fields completed by the user, and profile visibility settings.
(b) User-generated content: Posts, replies, comments and reactions, poll and survey responses, images or other content submitted by users (where enabled), direct or private messages (if enabled), and Ask an Expert submissions.
(c) Platform usage data: Search queries, notifications and preferences, and analytics and usage data.
(d) Technical data: Technical data such as IP address, browser, device, logs and platform activity.
(e) Moderation and safeguarding data: Moderation records, reports, warnings, safeguarding records and account status.
Information may be stored in ELF’s platform systems, databases and approved service-provider systems. Users will only be added to mailing lists where they have opted in or where otherwise permitted by law.
Why do we collect your personal data?
We process your personal data for the following purposes:
(a) To create and manage user accounts: We process your account registration data, email address, username, display name, user role and profile information to create, authenticate and manage your ELF Connect account. This processing is necessary for the performance of our contract with you.
(b) To operate the ELF Connect platform: We process your user ID and platform usage data to provide you with access to the platform and its features. This processing is necessary for the performance of our contract with you.
(c) To provide access to resources and content: We process your usage data to provide you with access to our library of resources and content about respiratory conditions. This processing is necessary for the performance of our contract with you.
(d) To operate the community features: We process your user-generated content (including posts, comments, replies, reactions, poll responses and images), your profile information (including display name or nickname and profile visibility settings), your group memberships, and any private or direct messages you send or receive (if enabled), in order to provide and operate the community features. This processing is necessary for the performance of our contract with you. Your use of the community features is subject to the ELF Connect Community Guide.
(e) To allow users to participate: We process your data to allow you to join groups, comment, reply, react and otherwise participate in the platform. This processing is necessary for the performance of our contract with you.
(f) To operate AI-assisted search: We use an AI-supported search function to help you find relevant resources. Your search queries are processed to provide search results. This processing is necessary for the performance of our contract with you. Your search queries are not used to train the AI instance.
(g) To operate Ask an Expert: When you submit a question through the Ask an Expert feature, we process your user ID and question content to facilitate the expert panel response. This processing is necessary for the performance of our contract with you.
(h) To send service notifications: We may send you service-related communications and notifications about ELF Connect, including updates about your account, the platform and its features. This processing is necessary for the performance of our contract with you. Where we send you marketing communications, we will do so only with your consent, and you may withdraw your consent at any time.
(i) To moderate the platform and protect users: We process moderation records, reports, warnings, safeguarding records and account status information to moderate the platform, enforce our Community Guide and Terms of Use, and protect the safety and wellbeing of our users. This processing is based on our legitimate interests in maintaining a safe and welcoming platform environment.
(j) To manage reports, complaints and safeguarding concerns: We process your data to manage reports of inappropriate content or behaviour, to handle complaints, and to address safeguarding concerns. This processing is based on our legitimate interests in maintaining a safe platform and, where relevant, our legal obligations.
(k) To analyse usage and improve the service: We may analyse aggregated and anonymised usage data to understand how the platform is used and to improve our services, which may include evaluating and improving the performance of our AI-supported search function. This processing is based on our legitimate interests in developing and enhancing ELF Connect. For the avoidance of doubt, your search queries are not used to train or fine-tune the AI instance, and this commitment not to use data for AI training applies to all of your search queries.
(l) To manage consent and privacy rights: We process your data to manage your consent preferences and to respond to requests to exercise your data protection rights. This processing is necessary for compliance with our legal obligations under the GDPR and the UK GDPR.
(m) To comply with legal obligations: We may process your personal data where necessary to comply with applicable laws and regulations.
Special category (health) data
Because ELF Connect is designed for patients with respiratory conditions, the search queries you enter, the questions you submit through the ‘Ask a Question’ feature, and any content you post through the Community Feature may contain information about your health. Information concerning health is a special category of personal data under Article 9 of the GDPR and the UK GDPR and is subject to additional protection.
Where we process special category data of this kind, we rely on your explicit consent under Article 9(2)(a) of the GDPR and the UK GDPR. You may withdraw your consent at any time by contacting us, although this will not affect the lawfulness of any processing carried out before withdrawal. We apply appropriate safeguards to protect special category data, including: data minimisation; access controls; role-based admin access; secure hosting; contractual restrictions on service providers; written data processing agreements with processors, where required; restrictions on use of search queries for AI training; moderation and reporting processes; safeguarding escalation processes where appropriate; user account controls; consent capture at registration; ability for users to withdraw consent; and retention, deletion and anonymisation processes where appropriate.
Community feature
ELF Connect includes a community feature that allows users to interact with each other (the Community Feature). ELF and healthcare professionals may create posts, add images, polls and text, comment, reply and react to content (such as likes). Patients may view posts, comment on posts, reply to comments and react to content, but may not create new posts.You should not share any personal information (whether about yourself or others) that you do not wish to be publicly accessible.
Your use of the Community Feature is governed by the ELF Connect Terms of Use and the ELF Connect Community Guide, which sets out the rules for participation. For further information, please refer to the Terms of Use which can be accessed here [link] and the Community Guide which can be accessed here: https://elfconnect.eu/community-guidelines/. Key points include:
(a) Profile and display name: You may set up a profile and choose a display name or nickname. You are responsible for the accuracy of your profile information and for keeping it up to date. Your profile visibility settings determine what information is visible to other users.
(b) User-generated content: You are responsible for the content you post, including posts, replies, comments, reactions, poll responses and images. By posting content, you grant ELF a licence to use, display and distribute that content within the platform.
(c) Groups: You may join or participate in groups within the community. Group membership and participation are subject to the Community Guide.
(d) Private or direct messages: If enabled, you may send and receive private or direct messages through the platform. These messages are subject to the same content rules as public posts.
(e) Reporting: You may report content or users that you believe breach the Community Guide. We will review reports and take appropriate action, which may include removing content or suspending accounts.
(f) Moderation and takedown: ELF reserves the right to moderate, edit or remove any content that breaches the Community Guide, these terms or applicable law. We may take down content without prior notice where we consider it necessary.
(g) Account suspension and removal: ELF may suspend or remove your account if you breach the Community Guide or these terms, or if we consider it necessary to protect the safety or wellbeing of other users.
(h) Prohibited content and behaviour: You must not post content that is unlawful, harmful, threatening, abusive, harassing, defamatory, obscene, hateful or otherwise objectionable. You must not impersonate any person or entity, or misrepresent your affiliation with any person or entity.
(i) Medical misinformation: You must not post content that contains medical misinformation or that could reasonably be expected to cause harm if relied upon.
(j) No user-to-user medical advice: The Community Feature is not intended for the provision of medical advice from one user to another. You must not provide or seek individualised medical advice through the community. If you require medical advice, please consult a qualified healthcare professional.
(k) No emergency use: The Community Feature is not intended for use in medical emergencies. If you are experiencing a medical emergency, please contact your local emergency services immediately.
(l) Safeguarding: If we become aware of any safeguarding concerns through content posted on the community, we may take appropriate action, including escalating the matter to relevant authorities where necessary.
Who do we share your personal data with?
We do not sell your personal data. We may share your personal data with the following categories of recipients where necessary for the purposes described in this Privacy Notice:
(a) Expert panel members: Where you submit a new question through the Ask an Expert feature, expert panel members receive only the information needed to answer the question. This may include: the question submitted by you; relevant context you have chosen to include; condition or topic category, where relevant; and language, where relevant. Expert panel members do not receive your name, email address, full profile, wider account details or other identifying information unless there is a specific operational or legal reason to share it.
(b) Service providers: We may share your data with third-party service providers who assist us in operating the platform, including hosting providers, IT support, and analytics providers. These providers are contractually bound to process your data only on our instructions and in accordance with data protection laws.
(c) AI service provider: Where our AI-supported search function is provided or hosted by a third-party provider OpenAI API, your search queries may be transmitted to that provider solely for the purpose of generating search results. Your search queries are not used to train the AI instance. Any such provider acts as our processor, is bound by a written data processing agreement, and may process your data only on our instructions and in accordance with data protection laws. Where this involves a transfer of personal data outside the EEA or the UK, we put in place appropriate safeguards as described in the ‘International transfers of personal data’ section below.
(d) European Respiratory Society (ERS): As ELF operates under ERS, your data may be shared within this organisational structure for administrative and operational purposes.
(e) Legal and regulatory authorities: We may disclose your data where required by law or to protect our legal rights.
Automated decision-making and AI
The ELF Connect platform uses an AI-supported search function to help you find relevant resources. The AI instance does not make any decisions that produce legal effects concerning you or that similarly significantly affect you. Search results are generated algorithmically from our curated library of resources and are not individually reviewed by ELF before being presented to you. We do not carry out any profiling of you. Accordingly, you are not subject to decisions based solely on automated processing within the meaning of Article 22 of the GDPR and the UK GDPR.
International transfers of personal data
ELF operates under the European Respiratory Society (ERS) which is based in Switzerland. Switzerland is recognised as providing an adequate level of data protection under both the EU GDPR and the UK GDPR. Where your personal data is transferred outside the European Economic Area (EEA) or the United Kingdom, we ensure that appropriate safeguards are in place. In particular, where our AI-supported search function is hosted on infrastructure located outside the EEA or the UK, your search queries may be transmitted to that infrastructure in order to generate search results. Any such transfer is made on the basis ofan adequacy decision or, where no adequacy decision applies, the UK International Data Transfer Agreement and/or the European Commission’s standard contractual clauses, together with any additional safeguards required to protect your personal data.
How long do we keep your personal data?
We retain your personal data only for as long as necessary to fulfil the purposes for which it was collected, including to satisfy any legal, accounting or reporting requirements. When you close your ELF Connect account, we will delete or anonymise your personal data, unless we are required to retain it for legal or regulatory purposes.
Opting out, changing or having your information deleted
At any time, you can cancel or modify your information by contacting the ELF office (info@europeanlung.org). You can also at any time ask to see your data by contacting us. ELF takes very seriously the accuracy of the information it holds on you. Where contact details are not provided on the page and if you wish to have all your personal information deleted from our databases, you can contact us for further information.
What choices are available to you regarding collection, use and distribution of the information?
Any information on new ELF activities that you registered to receive will be sent to you electronically or by other means. ELF may also send you e-mail messages and newsletters which you consented to and are of interest to you. You can indicate that you do not wish to receive such e-mail messages or newsletters by using the unsubscribe link in the newsletters or emailing us at info@europeanlung.org and you will be removed from the recipients’ list.
How do we protect your personal data?
We implement appropriate technical and organisational measures to protect your personal data against unauthorised access, alteration, disclosure or destruction. However, no method of transmission over the internet or electronic storage is completely secure, and we cannot guarantee absolute security.
Cookies and similar technologies
ELF Connect uses cookies and similar technologies to provide and improve the platform. Cookies are small text files stored on your device that help us recognise you, remember your preferences, and understand how you use the platform.
For statistical analysis purposes, a cookie may also be used to pass a randomly generated and anonymous unique number to our servers. Cookies cannot be used by themselves to identify you. A cookie will typically contain the name of the domain from which the cookie has come, as well as the lifetime and expiration of the cookie, and a value, usually a text value or a randomly generated unique number.
You can manage your cookie preferences through your settings. However, disabling certain cookies may affect your ability to use some features of ELF Connect.
Links to third-party resources
ELF Connect may contain links to third-party websites or resources from trusted partners. We are not responsible for the privacy practices or content of these external sites. We encourage you to review the privacy notices of any third-party sites you visit.
Your legal rights
You have a number of rights under data protection laws in relation to your personal data.
You have the right to:
• Request access to your personal data (commonly known as a “subject access request”). This enables you to receive a copy of the personal data we hold about you and to check that we are lawfully processing it.
• Request correction of the personal data that we hold about you. This enables you to have any incomplete or inaccurate data we hold about you corrected, though we may need to verify the accuracy of the new data you provide to us.
• Request erasure of your personal data in certain circumstances. This enables you to ask us to delete or remove personal data where there is no good reason for us continuing to process it. You also have the right to ask us to delete or remove your personal data where you have successfully exercised your right to object to processing (see below), where we may have processed your information unlawfully or where we are required to erase your personal data to comply with local law. Note, however, that we may not always be able to comply with your request of erasure for specific legal reasons which will be notified to you, if applicable, at the time of your request.
• Object to processing of your personal data where we are relying on a legitimate interest (or that of a third party) as the legal basis for that particular use of your data. In some cases, we may demonstrate that we have compelling legitimate grounds to process your information which override your right to object.
• You also have the absolute right to object any time to the processing of your personal data for direct marketing purposes (see clause above headed ‘What choices are available to you regarding collection, use and distribution of the information?’ for details of how to object to receiving direct marketing communications).
• Request the transfer of your personal data to you or to a third party. We will provide to you, or a third party you have chosen, your personal data in a structured, commonly used, machine-readable format. Note that this right only applies to automated information which you initially provided consent for us to use or where we used the information to perform a contract with you.
• Withdraw consent at any time where we are relying on consent to process your personal data (see clauses above headed ‘Why do we collect your personal data?’ and ‘Special Category (health) Data’ for details of when we rely on your consent as the legal basis for using your data). However, this will not affect the lawfulness of any processing carried out before you withdraw your consent. If you withdraw your consent, we may not be able to provide certain products, information or services to you. We will advise you if this is the case at the time you withdraw your consent.
• Request restriction of processing of your personal data. This enables you to ask us to suspend the processing of your personal data in one of the following scenarios:
o If you want us to establish the data’s accuracy;
o Where our use of the data is unlawful but you do not want us to erase it;
o Where you need us to hold the data even if we no longer require it as you need it to establish, exercise or defend legal claims; or
o You have objected to our use of your data but we need to verify whether we have overriding legitimate grounds to use it.
Complaints
If you believe that we have breached data protection laws in the way we collect, use, store or otherwise handle your personal information, you have the right to make a complaint directly to us, to the Information Commissioner’s Office (ICO), or to pursue legal action. You do not need to complain to us before contacting the ICO or taking legal action.
We will acknowledge receipt of your complaint within 30 days of receipt and will aim to reach an outcome within 30 working days. Some complaints may take longer to resolve where they are complex, serious or relate to multiple data protection issues; in such cases, we will keep you informed of our progress and expected timeframes.
Where your complaint relates to personal information processed by one of our service providers, we will liaise with the relevant provider to obtain details and information relevant to your complaint without undue delay.
If you are dissatisfied with the outcome or any aspect of how we have handled your complaint, you may lodge a complaint with a supervisory authority. In the UK, this is the Information Commissioner’s Office (ICO) at www.ico.org.uk. In the EU, you may contact your local data protection supervisory authority. You also have the right to complain to the ICO, or your local supervisory authority at any time and, in the UK, to lodge a claim before a competent court, irrespective of whether you have lodged a complaint with us using our complaints process.
Contact us
If you have any questions about this Privacy Notice or how we process your personal data, or if you wish to raise a complaint with us, or you wish to exercise your other data protection rights, please contact us at:
European Lung Foundation
Email: info@europeanlung.org
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