Privacy Policy
This data protection declaration informs you about the type, scope and purpose of the processing of personal data (hereinafter referred to as “data”) within our online offer and the websites, functions and content associated with it, as well as external online presences, such as our social media profiles (hereinafter collectively referred to as “online offer”). With regard to the terms used, such as “processing” or “controller”, we refer to the definitions in Article 4 of the General Data Protection Regulation (GDPR). (hereinafter collectively referred to as “online offer”). With regard to the terms used, such as “processing” or “controller”, we refer to the definitions in Article 4 of the General Data Protection Regulation (GDPR).
Responsible
Aplastische Anämie & PNH e.V.
P.O. Box 52 03 25
D – 12593 Berlin
Email: info(at)aa-pnh.org
Contact: Ulrike Göbel
Link to Imprint
Types of data processed
– Inventory data (e.g., personal master data, names or addresses).
– Contact data (e.g., email, telephone numbers).
– Content data (e.g., text input, photographs, videos).
– Usage data (e.g., web pages visited, interest in content, access times).
– Meta/communication data (e.g., device information, IP addresses).
Categories of data subjects
Visitors and users of the online offer (hereinafter we also refer to the data subjects collectively as “users”).
Purpose of processing
– Provision of the online offer, its functions and contents.
– Responding to contact requests and communicating with users.
– Security measures.
– Reach measurement/marketing
Terms used
“Personal data” means any information relating to an identified or identifiable natural person (hereinafter “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. 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 upon personal data, whether or not by automatic means. The term is broad and covers virtually any handling of data.
“Pseudonymisation” means the processing of personal data in such a way that personal data can no longer be related to a specific data subject without additional information, provided that such additional information is kept separately and is subject to technical and organisational measures which ensure that the personal data are not attributed to an identified or identifiable natural person.
“Profiling” means any automated processing of personal data which consists in using such personal data to evaluate certain personal aspects relating to a natural person, in particular to analyse or predict aspects relating to that natural person’s performance at work, economic situation, health, personal preferences, interests, reliability, behaviour, location or change of location.
“Controller” means 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 Art. 13 DSGVO, we inform you about the legal basis of our data processing. For users from the area of application of the General Data Protection Regulation (GDPR), i.e. the EU and the EEC, the following applies, unless the legal basis is stated in the privacy policy:
The legal basis for obtaining consent is Art. 6 para. 1 lit. a and Art. 7 DSGVO; r processing for the fulfilment of our services and implementation of contractual measures as well as answering enquiries is Art. 6 (1) 1 lit. 1 lit. a and Art. 7 DSGVO;
r processing for the fulfilment of our services and implementation of contractual measures as well as answering enquiries is Art. 6 1 lit. b DSGVO; The legal basis for processing for the fulfilment of our legal obligations is Art. 6 para 1 lit. c DSGVO;
The legal basis for processing for the fulfilment of our legal obligations is Art. 6 para 1 lit. c DSGVO;
In the event that vital interests of the data subject or another natural person make processing of personal data necessary, Art. 6 (1) 1 lit. d DSGVO serves as the legal basis. 1 lit. d DSGVO serves as the legal basis.
The legal basis for the processing necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller is Art. 6 (1) e DSGVO. 1 lit. e DSGVO.
The legal basis for processing to protect our legitimate interests is Art. 6 (1) lit. f DSGVO. 1 lit. f DSGVO.
The processing of data for purposes other than those for which they were collected is determined by the requirements of Art. 6 (4) DSGVO. (4) DSGVO.
The processing of special categories of data (in accordance with Art. 9 (1) DSGVO) is governed by the provisions of Art. 9 2 DSGVO. 2 DSGVO.
Security measures
We take appropriate technical and organisational measures to ensure a level of security appropriate to the risk, in accordance with the law, taking into account the state of the art, the cost of implementation and the nature, scope, context and purposes of the processing, as well as the varying likelihood and severity of the risk to the rights and freedoms of natural persons.
The 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, disclosure, ensuring availability and segregation of the data. We also have procedures in place to ensure the exercise of data subjects’ rights, deletion of data and response to data compromise. Furthermore, we already take the protection of personal data into account in the development and selection of hardware, software and procedures, in accordance with the principle of data protection through technology design and through data protection-friendly default settings.
Cooperation with processors, joint controllers and third parties
If, in the course of our processing, we disclose data to other persons and companies (processors, joint controllers or third parties), transmit it to them or otherwise grant them access to the data, this will only be done on the basis of a legal permission (e.g. if a transmission of the data to third parties, such as to payment service providers, is necessary for the performance of the contract), users have consented, a legal obligation provides for this or on the basis of our legitimate interests (e.g. when using agents, web hosts, etc.).
If we disclose or transfer data to other companies in our group of companies or otherwise grant them access, this is done in particular for administrative purposes as a legitimate interest and, in addition, on a basis that complies with the legal requirements.
Transfer to third countries
If we process data in a third country (i.e. outside the European Union (EU), the European Economic Area (EEA) or the Swiss Confederation) or do so in the context of using third-party services or disclosing, or transferring data to other persons or companies, this will only be done if it is done to fulfil our (pre-)contractual obligations, on the basis of your consent, due to a legal obligation or on the basis of our legitimate interests. Subject to explicit consent or contractually required transfer, we only process or allow the data to be processed in third countries with a recognised level of data protection, which includes US processors certified under the “Privacy Shield”, or on the basis of special guarantees, such as e.g. contractual obligation through so-called standard protection clauses of the EU Commission, the existence of certifications or binding internal data protection regulations (Art. 44 bis 49 DSGVO, Information page of the EU Commission ).
Rights of data subjects
Right of access: You have the right to obtain confirmation as to whether or not data relating to you is being processed and to be informed of such data and to obtain further information and a copy of the data in accordance with the law.
Right to rectification: You have the right, in accordance with the law, to request that data concerning you be completed or that inaccurate data concerning you be rectified.
Right to erasure and restriction of processing: You have the right, in accordance with the law, to request that data concerning you be erased immediately or, alternatively, to request restriction of the processing of the data in accordance with the law.
Right to data portability: You have the right to receive data concerning you, which you have provided to us, in a structured, common and machine-readable format in accordance with the legal requirements, or to demand that it be transferred to another person responsible.
Complaint to the supervisory authority: You also have the right to lodge a complaint with the competent supervisory authority in accordance with the legal requirements.
Right of revocation
You have the right to revoke any consent you have given with effect for the future.
Right of objection
Right of objection: You have the right to object at any time, on grounds relating to your particular situation, to the processing of personal data concerning you which is carried out on the basis of Article 6 (1); (e) or (f) DSGVO this also applies to profiling based on these provisions. 1 lit. (e) or (f) DSGVO this also applies to profiling based on these provisions. If the personal data concerning you are processed for the purpose of direct marketing, you have the right to object at any time to the processing of personal data concerning you for the purpose of such marketing; this also applies to profiling insofar as it is related to such direct marketing.
Cookies and right to object direct marketing
Cookies” are small files that are stored on users’ computers. Different information can be stored within the cookies. A cookie is primarily used to store information about a user (or the device on which the cookie is stored) during or after his or her visit to an online offer. Temporary cookies, or “session cookies” or “transient cookies”, are cookies that are deleted after a user leaves an online offer and closes his or her browser. In such a cookie, for example, the contents of a shopping basket in an online shop or a login status can be stored. Cookies that remain stored even after the browser is closed are referred to as “permanent” or “persistent”. For example, the login status can be stored if users visit them after several days. Likewise, the interests of users can be stored in such a cookie, which is used for range measurement or marketing purposes. Third-party cookies” are cookies that are offered by providers other than the responsible party that operates the online offer (otherwise, if they are only its cookies, they are referred to as “first-party cookies”).
We may use temporary and permanent cookies and explain this in our privacy policy.
If we ask users to consent to the use of cookies (e.g. in the context of a cookie consent), the legal basis of this processing is Art. 6 para. 1 lit. a. DSGVO. 1 lit. lit. a. DSGVO. Otherwise, the personal cookies of the users are processed in accordance with the following explanations within the scope of this data protection declaration on the basis of our legitimate interests (i.e. interest in the analysis, optimisation and economic operation of our online offer within the meaning of Art. 6 Para. 1 lit. f. DSGVO) or insofar as the use of cookies is necessary for the provision of our contract-related services, pursuant to Art. 6 para. 1 lit. b. DSGVO, or if the use of cookies is necessary for the performance of a task in the public interest or in the exercise of official authority, pursuant to Art. 6 para. 1 lit. e. DSGVO, processed. Art. 6 para. 1 lit. lit. b. DSGVO, or if the use of cookies is necessary for the performance of a task in the public interest or in the exercise of official authority, pursuant to Art. 6 para. 1 lit. lit. e. DSGVO, processed.
If users do not want cookies to be stored on their computer, they are asked to deactivate the corresponding option in the system settings of their browser. Stored cookies can be deleted in the system settings of the browser. The exclusion of cookies can lead to functional restrictions of this online offer.
A general objection to the use of cookies used for online marketing purposes can be declared for a large number of services, especially in the case of tracking, via the US site http://www.aboutads.info/choices/ or the EU site http://www.youronlinechoices.com/. Furthermore, the storage of cookies can be achieved by switching them off in the browser settings. Please note that you may then not be able to use all the functions of this online offer.
Deletion of data
The data we process will be deleted or restricted in its processing in accordance with the law. Unless expressly stated within the scope of this data protection declaration, the data stored by us will be deleted as soon as it is no longer required for its intended purpose and the deletion does not conflict with any statutory retention obligations.
If the data is not deleted because it is required for other and legally permissible purposes, its processing will be restricted. I.e. the data is blocked and not processed for other purposes. This applies, for example, to data that must be retained for reasons of commercial or tax law.
Changes and updates to the privacy policy
We ask you to check the contents of our privacy policy regularly. We adapt the privacy statement as soon as the changes in the data processing carried out by us make this necessary. We will inform you as soon as the changes require an act of cooperation on your part (e.g. consent) or other individual notification.
Provision of our statutory and business services
We process the data of our members, supporters, interested parties, customers or other persons in accordance with Art. 6 para. 1 1 lit. b. DSGVO, insofar as we offer them contractual services or act within the framework of existing business relationships, e.g. towards members, or are ourselves recipients of services and benefits. 1 lit. 1 lit. b. DSGVO, insofar as we offer them contractual services or act within the framework of existing business relationships, e.g. towards members, or are ourselves recipients of services and benefits. Furthermore, we process the data of data subjects pursuant to Art. 6 para. 1 lit. f. DSGVO on the basis of our legitimate interests, e.g. when administrative tasks or public relations work are involved. Art. 6 para. 1 lit. lit. f. DSGVO on the basis of our legitimate interests, e.g. when administrative tasks or public relations work are involved.
The data processed in this context, the type, scope and purpose and the necessity of their processing are determined by the underlying contractual relationship. In principle, this includes inventory and master data of persons (e.g. name, address, etc.), as well as contact data (e.g. e-mail address, telephone, etc.), contract data (e.g. services used, content and information provided, names of contact persons) and, if we offer services or products that are subject to payment, payment data (e.g. bank details, payment history, etc.).
We delete data that is no longer required to fulfil 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 the processing of the business as well as with regard to any warranty or liability obligations. The necessity of storing the data is reviewed every three years; otherwise, the statutory retention obligations apply.
Contacting us
When contacting us (e.g. by contact form, e-mail, telephone or via social media), the user’s details are used to process the contact request and its settlement pursuant to Art. 6 para. 1 lit. b. (in the context of contractual/pre-contractual relations), Art. 6 para. 1 lit. f. (other enquiries) DSGVO. The user’s details may be stored in a customer relationship management system (“CRM system”) or comparable enquiry organisation.
We delete the enquiries if they are no longer necessary. We review the necessity every two years; Furthermore, the legal archiving obligations apply.
Newsletter
With the following information we inform you about the contents of our newsletter as well as the registration, dispatch and statistical evaluation procedure and your rights of objection. By subscribing to our newsletter, you agree to receive it and to the procedures described. .
Content of the newsletter: We send newsletters, e-mails and other electronic notifications with promotional information (hereinafter “newsletter”) only with the consent of the recipients or a legal permission. If the contents of the Newsletter are specifically described in the course of registration, they are decisive for the consent of the users. Apart from that, our newsletters contain information about our services and us.
Double opt-in and logging: Registration for our newsletter is carried out in a so-called double opt-in procedure. This means that after registration you will receive an e-mail in which you are asked to confirm your registration. This confirmation is necessary so that no one can register with other email addresses. The registrations for the newsletter are logged in order to be able to prove the registration process in accordance with the legal requirements. This includes the storage of the registration and confirmation time as well as the IP address. Likewise, changes to your data stored with the dispatch service provider are logged.
Registration data: To register for the newsletter, it is sufficient to enter your e-mail address. Optionally, we ask you to enter a name for the purpose of a personal address in the newsletter.
The newsletter is sent and its success measured on the basis of the recipients’ consent pursuant to Art. 6 para. 1 lit. a, Art. 7 DSGVO 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. Art. 6 Para. 1 lt. f. DSGVO in conjunction with § 7 Para. 2 No. 3 UWG. Art. 6 para. 1 lit. lit. a, Art. 7 DSGVO 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. Art. 6 Para. 1 lt. f. DSGVO in conjunction with § 7 Para. 2 No. 3 UWG.
The logging of the registration process is based on our legitimate interests pursuant to Art. 6 para. 1 lit. f DSGVO. Art. 6 para. 1 lit. f DSGVO. Our interest is to use a user-friendly and secure newsletter system that serves our business interests as well as the expectations of the users and also allows us to prove consent.
Cancellation/revocation – You can cancel the receipt of our newsletter at any time, i.e. revoke your consent. You will find a link to cancel the newsletter 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 consent previously given. The processing of this data is limited to the purpose of a possible defence against claims. An individual deletion request is possible at any time, provided that the former existence of consent is confirmed at the same time..
Newsletter – success measurement
The newsletters contain a so-called “web-beacon”, i.e. a pixel-sized file that is retrieved from our server or, if we use a dispatch service provider, from their server when the newsletter is opened. Within the scope of this retrieval, technical information such as information on the browser and your system, as well as your IP address and the time of the retrieval are initially collected.
This information is used for the technical improvement of the services on the basis of the technical data or the target groups and their reading behaviour on the basis of their retrieval locations (which can be determined with the help of the IP address) or the access times. Statistical surveys also include determining whether newsletters are opened, when they are opened and which links are clicked. For technical reasons, this information can be assigned to the individual newsletter recipients. However, it is neither our intention nor, if used, that of the dispatch service provider to observe individual users. The evaluations serve us much more to recognise the reading habits of our users and to adapt our content to them or to send different content according to the interests of our users. .
A separate revocation of the performance measurement is unfortunately not possible, in this case the entire newsletter subscription must be cancelled.
Hosting und Emailing
The hosting services used by us serve to provide the following services: Infrastructure and platform services, computing capacity, storage space and database services, e-mail dispatch, security services and technical maintenance services, which we use for the purpose of operating this online offer.
In doing so, we, or our hosting provider, process inventory data, contact data, content data, contract data, usage data, meta data and communication data of customers, interested parties and visitors of this online offer on the basis of our legitimate interests in an efficient and secure provision of this online offer pursuant to Art. 6 para. 1 lit. f DSGVO in conjunction with Art. 28 DSGVO (conclusion of order processing agreement). Art. 6 para. 1 lit. lit. f DSGVO in conjunction with Art. 28 DSGVO (conclusion of order processing agreement).
Collection of access data and log files
We, or rather our hosting provider, collect on the basis of our legitimate interests within the meaning of Art. 6 para. 1 lit. f. DSGVO, we or our hosting provider collect data about each access to the server on which this service is located (so-called server log files). 1 lit. lit. f. DSGVO, we or our hosting provider collect data about each access to the server on which this service is located (so-called server log files). The access data includes the name of the website accessed, file, date and time of access, amount of data transferred, notification of successful access, browser type and version, the user’s operating system, referrer URL (the previously visited page), IP address and the requesting provider.
Log file information is stored for security reasons (e.g. for the clarification of abuse or fraud) for a maximum of 7 days and then deleted. Data whose further storage is necessary for evidentiary purposes are excluded from deletion until the final clarification of the respective incident.
OpenStreetMap
We embed the maps of the service “OpenStreetMap” (https://www.openstreetmap.de), which are offered on the basis of the Open Data Commons Open Database Licence (ODbL) by the OpenStreetMap Foundation (OSMF). Privacy policy: https://wiki.openstreetmap.org/wiki/Privacy_Policy.
As far as we are aware, user data is used by OpenStreetMap solely for the purpose of displaying the map functions and temporarily storing the selected settings. This data may include, in particular, IP addresses and location data of the users, which, however, are not collected without their consent (usually executed within the framework of the settings of their mobile devices).
The data may be processed in the USA. Further information can be found in the privacy policy of OpenStreetMap:https://wiki.openstreetmap.org/wiki/Privacy_Policy.