Privacy Policy

This privacy policy informs you about the nature, scope, and purpose of the processing of personal data (hereinafter referred to as "data") within our online services and the associated websites, functions, and content, as well as external online presences, such as our social media profiles (hereinafter collectively referred to as "online services"). Regarding the terminology used, such as "processing" or "controller," we refer to the definitions in Article 4 of the General Data Protection Regulation (GDPR).

Responsible

Society for Alpha-1 Antitrypsin Deficiency Patients eV.
Old Country Road 3
64579 Gernsheim

Represented by:
Marion Wilkens
1. Chairperson

Contact:
Service number: 0800-5894662 (free of charge)
Email: info@alpha1-deutschland.org
Register entry:
Registration in the register of associations.
Register court: Cologne District Court
Registration number: VR 13660

VAT ID:
VAT identification number according to §27a of the German VAT Act:

Supervisory authority:
Cologne District Court

Types of data processed:

– Inventory data (e.g., names, addresses).
– Contact details (e.g., email, phone numbers).
– Content data (e.g., text entries, photographs, videos).
– Usage data (e.g., websites visited, interest in content, access times).
– Metadata/communication data (e.g., device information, IP addresses).

Categories of affected persons

Visitors and users of the online service (hereinafter we will refer to the persons concerned collectively as "users").

Purpose of processing

– Provision of the online service, its functions and content.
– Responding to contact requests and communicating with users.
– Security measures.
– Reach measurement/marketing

Terminology used

„Personal data“ means any information relating to an identified or identifiable natural person (hereinafter referred to as „data subject“); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier (e.g. a cookie) or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.

„"Processing" means any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means. The term is broad and encompasses virtually any handling of data.

„Pseudonymisation“ means the processing of personal data in such a manner that the personal data can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures to ensure that the personal data are not attributed to an identified or identifiable natural person.

„Profiling“ means any type of automated processing of personal data consisting of the use of personal data to evaluate certain personal aspects relating to a natural person, in particular to analyze or predict aspects concerning that natural person’s performance at work, economic situation, health, personal preferences, interests, reliability, behavior, location or movements.

The term „controller“ refers to the natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data.

„Processor“ means a natural or legal person, public authority, agency or other body which processes personal data on behalf of the controller.

Relevant legal bases

In accordance with Article 13 of the GDPR, we inform you of the legal bases for our data processing. Unless otherwise stated in the privacy policy, the following applies: The legal basis for obtaining consent is Article 6(1)(a) and Article 7 of the GDPR; the legal basis for processing data to fulfill our services and implement contractual measures, as well as to respond to inquiries, is Article 6(1)(b) of the GDPR; the legal basis for processing data to comply with our legal obligations is Article 6(1)(c) of the GDPR; and the legal basis for processing data to protect our legitimate interests is Article 6(1)(f) of the GDPR. In the event that processing personal data is necessary to protect the vital interests of the data subject or another natural person, Article 6(1)(d) of the GDPR serves as the legal basis.

Security measures

In accordance with Article 32 GDPR, taking into account the state of the art, the costs of implementation and the nature, scope, context and purposes of processing as well as the varying likelihood and severity of the risk to the rights and freedoms of natural persons, we implement appropriate technical and organisational measures to ensure a level of security appropriate to the risk.

These measures include, in particular, ensuring the confidentiality, integrity, and availability of data by controlling physical access to the data, as well as access to, input of, transfer of, and ensuring the availability and separation of the data. Furthermore, we have established procedures that guarantee the exercise of data subject rights, the deletion of data, and responses to data breaches. We also consider the protection of personal data during the development and selection of hardware, software, and processes, in accordance with the principles of data protection by design and by default (Article 25 GDPR).

Cooperation with processors and third parties

If, in the course of our processing, we disclose data to other persons and companies (processors or third parties), transmit it to them or otherwise grant them access to the data, this is done only on the basis of a legal permission (e.g., if the transfer of data to third parties, such as payment service providers, is necessary for the performance of a contract pursuant to Art. 6 para. 1 lit. b GDPR), if you have given your consent, if a legal obligation requires it, or on the basis of our legitimate interests (e.g., when using agents, web hosts, etc.).

If we commission third parties to process data on the basis of a so-called "data processing agreement", this is done on the basis of Art. 28 GDPR.

Transfers to third countries

If we process data in a third country (i.e., outside the European Union (EU) or the European Economic Area (EEA)), or if this occurs in the context of using third-party services or disclosing or transferring data to third parties, this will only be done if it is necessary for the performance of our (pre-)contractual obligations, based on your consent, due to a legal obligation, or based on our legitimate interests. Subject to legal or contractual permissions, we will only process or have data processed in a third country if the special requirements of Articles 44 et seq. of the GDPR are met. This means, for example, that processing is based on special guarantees, such as the officially recognized finding of a level of data protection equivalent to that of the EU (e.g., for the USA through the "Privacy Shield") or compliance with officially recognized specific contractual obligations (so-called "standard contractual clauses").

Rights of data subjects

You have the right to request confirmation as to whether data concerning you is being processed, and to access this data as well as further information and a copy of the data in accordance with Article 15 GDPR.

In accordance with Article 16 of the GDPR, you have the right to request the completion of your personal data or the rectification of inaccurate personal data concerning you.

In accordance with Article 17 GDPR, you have the right to request that the data in question be deleted without undue delay, or alternatively, in accordance with Article 18 GDPR, to request a restriction of the processing of the data.

You have the right to request access to the data concerning you that you have provided to us in accordance with Article 20 GDPR and to request its transmission to other controllers.

Furthermore, pursuant to Article 77 GDPR, you have the right to lodge a complaint with the competent supervisory authority.

Right of withdrawal

You have the right to withdraw your consent pursuant to Art. 7 para. 3 GDPR with effect for the future.

Right to object

You can object to the future processing of your personal data at any time in accordance with Article 21 of the GDPR. This objection can be made, in particular, against processing for direct marketing purposes.

Cookies and the right to object to direct marketing

Cookies are small files that are stored on users' computers. Various types of information can be stored within cookies. A cookie primarily serves to store information about a user (or the device on which the cookie is stored) during or even after their visit to an online service. Temporary cookies, also known as "session cookies" or "transient cookies," are deleted after a user leaves an online service and closes their browser. Such a cookie might, for example, store the contents of a shopping cart in an online store or a login status. "Permanent" or "persistent" cookies remain stored even after the browser is closed. These can, for example, save login status so that users remain logged in when they return to the site after several days. Similarly, user interests can be stored in such a cookie for audience measurement or marketing purposes. Third-party cookies are cookies that are offered by providers other than the operator of the online service (otherwise, if they are only the operator's own cookies, they are called first-party cookies).

We may use temporary and permanent cookies, and we explain this in our privacy policy.

If users do not wish to have cookies stored on their computer, they are asked to deactivate the corresponding option in their browser's system settings. Stored cookies can be deleted in the browser's system settings. Disabling cookies may lead to functional limitations of this online service.

A general objection to the use of cookies for online marketing purposes can be made via the US website for many services, especially in the case of tracking. http://www.aboutads.info/choices/ or the EU website http://www.youronlinechoices.com/ This will be explained. Furthermore, the storage of cookies can be prevented by disabling them in your browser settings. Please note that some features of this website may then not be available.

Deletion of data

The data we process will be erased or its processing restricted in accordance with Articles 17 and 18 of the GDPR. Unless expressly stated otherwise in this privacy policy, the data stored by us will be erased as soon as it is no longer required for its intended purpose and there are no legal obligations to retain it. If the data is not erased because it is required for other legally permissible purposes, its processing will be restricted. This means that the data will be blocked and not processed for other purposes. This applies, for example, to data that must be retained for commercial or tax law reasons.

In accordance with legal requirements in Germany, records are retained for 10 years in particular pursuant to Sections 147 Paragraph 1 AO, 257 Paragraph 1 Nos. 1 and 4, Paragraph 4 HGB (books, records, management reports, accounting documents, ledgers, tax-relevant documents, etc.) and for 6 years pursuant to Section 257 Paragraph 1 Nos. 2 and 3, Paragraph 4 HGB (commercial correspondence).

According to legal requirements in Austria, records must be retained for 7 years in particular pursuant to § 132 para. 1 BAO (accounting records, receipts/invoices, accounts, vouchers, business papers, statements of income and expenses, etc.), for 22 years in connection with real estate and for 10 years for documents relating to electronically supplied services, telecommunications, broadcasting and television services provided to non-entrepreneurs in EU member states and for which the Mini One-Stop-Shop (MOSS) is used.

Provision of our services in accordance with our statutes and business practices

We process the data of our members, supporters, prospective members, customers, or other individuals in accordance with Article 6(1)(b) GDPR, insofar as we offer them contractual services or act within the framework of an existing business relationship, e.g., with members, or are ourselves recipients of services and contributions. Furthermore, we process the data of data subjects in accordance with Article 6(1)(f) GDPR on the basis of our legitimate interests, e.g., when it comes to administrative tasks or public relations.

The data processed in this context, its nature, scope, purpose, and the necessity of its processing are determined by the underlying contractual relationship. This generally includes personal data (e.g., name, address, etc.), contact details (e.g., email address, telephone number, etc.), contract data (e.g., services used, content and information provided, names of contact persons), and, if we offer services or products subject to payment, payment data (e.g., bank details, payment history, etc.).

We delete data that is no longer required for fulfilling our statutory and business purposes. This is determined according to the respective tasks and contractual relationships. In the case of business processing, we retain the data for as long as it may be relevant for business transactions, as well as with regard to any warranty or liability obligations. The necessity of retaining the data is reviewed every three years; otherwise, the statutory retention periods apply.

Retrieving profile pictures from Gravatar

We use the Gravatar service from Automattic Inc., 60 29th Street #343, San Francisco, CA 94110, USA, within our online services and especially in our blog.

Gravatar is a service where users can register and upload profile pictures and their email addresses. When users with that email address post or comment on other online platforms (especially blogs), their profile pictures can be displayed alongside their posts or comments. For this purpose, the email address provided by the user is encrypted and transmitted to Gravatar to check if a profile is associated with it. This is the sole purpose of transmitting the email address; it is not used for any other purpose and is subsequently deleted.

The use of Gravatar is based on our legitimate interests within the meaning of Art. 6 para. 1 lit. f) GDPR, as we use Gravatar to offer authors of posts and comments the opportunity to personalize their posts with a profile picture.

By displaying the images, Gravatar learns the user's IP address, as this is necessary for communication between a browser and an online service. Further information on the collection and use of data by Gravatar can be found in Automattic's privacy policy. https://automattic.com/privacy/.

If users do not want a profile picture associated with their email address on Gravatar to appear in the comments, they should use an email address that is not registered with Gravatar when commenting. We would also like to point out that it is possible to use an anonymous email address or no email address at all if users do not wish their email address to be transmitted to Gravatar. Users can completely prevent the transmission of data by not using our commenting system.

Contact

When you contact us (e.g., via contact form, email, telephone, or social media), your information will be processed in accordance with Art. 6 para. 1 lit. b (within the framework of contractual/pre-contractual relationships) and Art. 6 para. 1 lit. f (other inquiries) of the GDPR for the purpose of processing and handling your inquiry. Your information may be stored in a customer relationship management system ("CRM system") or a comparable system for managing inquiries.

We delete inquiries when they are no longer needed. We review the necessity of retaining inquiries every two years; statutory archiving obligations also apply.

The following information explains the content of our newsletter, the registration, distribution, and statistical analysis procedures, as well as your rights to object. By subscribing to our newsletter, you agree to receive it and to the procedures described.

Newsletter content: We only send newsletters, emails, and other electronic notifications containing promotional information (hereinafter "newsletters") with the recipient's consent or where legally permitted. If the newsletter's content is specifically described during the registration process, this description is decisive for the user's consent. Otherwise, our newsletters contain information about our services and our company.

Double opt-in and logging: Subscription to our newsletter uses a double opt-in process. This means that after registering, you will receive an email asking you to confirm your subscription. This confirmation is necessary to prevent anyone from subscribing using someone else's email address. Newsletter subscriptions are logged to document the registration process in accordance with legal requirements. This includes recording the time of registration and confirmation, as well as the IP address. Changes to your data stored with the email service provider are also logged.

Registration details: To subscribe to the newsletter, simply provide your email address. Optionally, you can also provide your name for personalized addressing in the newsletter.

The newsletter is sent and its success is measured based on the recipients' consent pursuant to Art. 6 para. 1 lit. a, Art. 7 GDPR in conjunction with § 7 para. 2 no. 3 UWG, or, if consent is not required, on the basis of our legitimate interests in direct marketing pursuant to Art. 6 para. 1 lit. f. GDPR in conjunction with § 7 para. 3 UWG.

The registration process is logged based on our legitimate interests pursuant to Art. 6 para. 1 lit. f GDPR. Our interest lies in the use of a user-friendly and secure newsletter system that serves both our business interests and meets user expectations, and also allows us to provide proof of consent.

Cancellation/Revocation – You can unsubscribe from our newsletter at any time, i.e., revoke your consent. You will find an unsubscribe link at the end of each newsletter. We may store unsubscribed email addresses for up to three years based on our legitimate interests before deleting them, in order to be able to prove previously given consent. The processing of this data is limited to the purpose of defending against potential claims. An individual deletion request is possible at any time, provided that the prior existence of consent is confirmed.

Newsletters are sent via the email marketing service "MailChimp," a newsletter distribution platform provided by the US company Rocket Science Group, LLC, 675 Ponce De Leon Ave NE #5000, Atlanta, GA 30308, USA. You can view the service provider's privacy policy here: https://mailchimp.com/legal/privacy/. The Rocket Science Group LLC d/b/a MailChimp is certified under the Privacy Shield agreement and thus guarantees compliance with European data protection standards (https://www.privacyshield.gov/participant?id=a2zt0000000TO6hAAG&status=ActiveThe shipping service provider is used on the basis of our legitimate interests pursuant to Art. 6 para. 1 lit. f. GDPR and a data processing agreement pursuant to Art. 28 para. 3 sentence 1 GDPR.

The email service provider may use recipient data in pseudonymized form, i.e., without linking it to a specific user, to optimize or improve its own services, for example, for the technical optimization of email delivery and the display of newsletters, or for statistical purposes. However, the email service provider does not use the data of our newsletter recipients to contact them directly or to share the data with third parties.

Hosting and email delivery

The hosting services we use serve to provide the following services: infrastructure and platform services, computing capacity, storage space and database services, email delivery, security services and technical maintenance services, which we use for the purpose of operating this online service.

In this process, we, or our hosting provider, process inventory data, contact data, content data, contract data, usage data, meta and communication data of customers, prospective customers and visitors of this online service on the basis of our legitimate interests in the efficient and secure provision of this online service pursuant to Art. 6 para. 1 lit. f GDPR in conjunction with Art. 28 GDPR (conclusion of a data processing agreement).

Google Analytics

Based on our legitimate interests (i.e., our interest in analyzing, optimizing, and operating our online services economically, in accordance with Article 6(1)(f) of the GDPR), we use Google Analytics, a web analytics service provided by Google LLC ("Google"). Google uses cookies. The information generated by the cookie about users' use of the online services is generally transmitted to and stored on a Google server in the USA.

Google is certified under the Privacy Shield agreement and thus guarantees compliance with European data protection law (https://www.privacyshield.gov/participant?id=a2zt000000001L5AAI&status=Active).

Google will use this information on our behalf to evaluate users' use of our online services, to compile reports on activity within these online services, and to provide us with other services related to the use of these online services and internet usage. Pseudonymous user profiles may be created from the processed data.

We only use Google Analytics with IP anonymization enabled. This means that Google shortens the IP address of users within member states of the European Union or in other contracting states of the Agreement on the European Economic Area. Only in exceptional cases will the full IP address be transmitted to a Google server in the USA and shortened there.

The IP address transmitted by the user's browser is not merged with other Google data. Users can prevent the storage of cookies by adjusting their browser settings; furthermore, users can prevent Google from collecting and processing data generated by the cookie and related to their use of the online service by downloading and installing the browser plugin available at the following link: http://tools.google.com/dlpage/gaoptout?hl=de.

For more information about Google's data usage, settings and opt-out options, please see Google's privacy policy (https://policies.google.com/technologies/ads) as well as in the settings for displaying advertisements by Google (https://adssettings.google.com/authenticated).

Users' personal data will be deleted or anonymized after 14 months.

Opt-out for Google Analytics cookie:

Automatic translation with TranslatePress (Google Translate API)

We use the TranslatePress plugin from SC Reflection Media SRL on our website to provide content in multiple languages. For automatic translation, TranslatePress uses the Google Translate API from Google LLC, 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA.

In this process, page content and any text entered by users (e.g., in forms) are transmitted to Google servers for translation and processing. The user's IP address may also be transmitted to Google.

The processing is based on our legitimate interests in multilingual, barrier-free accessibility of our online service for international users pursuant to Art. 6 para. 1 lit. f GDPR.

The transfer of data to the USA as a third country is based on the EU Commission's adequacy decision on the EU-US Data Privacy Framework (DPF), provided Google is certified under it; you can find the current certification status at https://www.dataprivacyframework.gov/ Check. Further information on how Google handles user data can be found in Google's privacy policy: https://policies.google.com/privacy. Information about TranslatePress itself can be found at: https://translatepress.com/privacy-policy/.

Online presence on social media

We maintain online presences within social networks and platforms in order to communicate with customers, prospects and users active there and to inform them about our services.

Please note that user data may be processed outside the European Union. This may pose risks for users, as it could, for example, make it more difficult to enforce their rights. With regard to US providers certified under the Privacy Shield, we would like to point out that they are thereby obligated to comply with EU data protection standards.

Furthermore, user data is generally processed for market research and advertising purposes. For example, user profiles can be created based on usage patterns and the resulting user interests. These user profiles can then be used to display advertisements, both on and off the platforms, that are likely to match the users' interests. For these purposes, cookies are typically stored on users' computers, recording their usage patterns and interests. Additionally, user profiles can also store data independent of the devices used by the users (especially if the users are members of the respective platforms and are logged in).

The processing of users' personal data is based on our legitimate interests in effectively informing and communicating with users, pursuant to Article 6(1)(f) GDPR. If users are asked by the respective providers for their consent to data processing (i.e., by giving their consent, for example, by ticking a checkbox or clicking a button), the legal basis for the processing is Article 6(1)(a) and Article 7 GDPR.

For a detailed description of the respective processing activities and the options for objecting (opt-out), we refer to the information provided by the providers linked below.

Regarding information requests and the assertion of user rights, we would like to point out that these can be most effectively addressed directly with the service providers. Only the providers have access to user data and can take appropriate action and provide information directly. However, should you require assistance, you can contact us.

– Google/YouTube (Google LLC, 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA) – Privacy Policy: https://policies.google.com/privacy, Opt-Out: https://adssettings.google.com/authenticated, Privacy Shield: https://www.privacyshield.gov/participant?id=a2zt000000001L5AAI&status=Active.

Integration of third-party services and content

Within our online services, we use content or service offerings from third-party providers based on our legitimate interests (i.e., interest in the analysis, optimization and economic operation of our online services within the meaning of Art. 6 para. 1 lit. f. GDPR) in order to integrate their content and services, such as videos or fonts (hereinafter referred to collectively as “Content”).

This always requires that the third-party providers of this content are aware of the users' IP addresses, as they could not send the content to their browsers without them. The IP address is therefore necessary for displaying this content. We strive to use only content from providers who use the IP address solely for delivering the content. Third-party providers may also use so-called pixel tags (invisible graphics, also known as "web beacons") for statistical or marketing purposes. These pixel tags allow information such as visitor traffic on the pages of this website to be analyzed. The pseudonymized information can also be stored in cookies on the users' devices and may include, among other things, technical information about the browser and operating system, referring websites, time of visit, and other information about the use of our online services, as well as be combined with such information from other sources.

YouTube

We embed videos from the platform “YouTube” provided by Google LLC, 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA. Privacy policy: https://www.google.com/policies/privacy/, Opt-Out: https://adssettings.google.com/authenticated.

Google Fonts

We integrate fonts ("Google Fonts") from the provider Google LLC, 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA. Privacy policy: https://www.google.com/policies/privacy/, Opt-Out: https://adssettings.google.com/authenticated.

Google Maps

We integrate maps from the "Google Maps" service provided by Google LLC, 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA. The data processed may include, in particular, users' IP addresses and location data, which, however, are not collected without their consent (usually obtained through their mobile device settings). The data may be processed in the USA. Privacy policy: https://www.google.com/policies/privacy/, Opt-Out: https://adssettings.google.com/authenticated.

Created with Datenschutz-Generator.de by Attorney Dr. Thomas Schwenke