Privacy policy

The following notices provide a simple overview of what happens to your personal data when you visit this website. Personal data is any data by which you can be personally identified. For detailed information on data protection, please refer to our privacy policy listed below this text.

DATA COLLECTION ON THIS WEBSITE

WHO IS RESPONSIBLE FOR DATA COLLECTION ON THIS WEBSITE?
Data processing on this website is carried out by the website operator. You can find his contact details in the section "Note on the responsible party" in this privacy policy.

WHAT RIGHTS DO YOU HAVE REGARDING YOUR DATA?
You have the right at any time to receive information free of charge about the origin, recipient and purpose of your stored personal data. You also have a right to request that this data be corrected or deleted. If you have given your consent to data processing, you can revoke this consent at any time for the future. You also have the right to request the restriction of the processing of your personal data under certain circumstances. Furthermore, you have the right to lodge a complaint with the competent supervisory authority. For this purpose, as well as for further questions on the subject of data protection, you can contact us at any time.

2. HOSTING
We host the contents of our website with the following provider: Webflow

Provider is Webflow, Inc, 398 11th Street, 2nd Floor, San Francisco, CA 94103, USA (hereinafter Webflow). When you visit our website, Webflow collects various log files including your IP addresses. Webflow is a tool for creating and hosting websites. Webflow stores cookies or other recognition technologies that are necessary for the presentation of the page, to provide certain website functions and to ensure security (necessary cookies). For details, see Webflow's privacy policy:https://webflow.com/legal/eu-privacy-policy. The use of Webflow is based on Art. 6 para. 1 lit. f DSGVO. We have a legitimate interest in the most reliable presentation of our website. Insofar as a corresponding consent has been requested, the processing is carried out exclusively on the basis of Art. 6 para. 1 lit. a DSGVO and § 25 para. 1 TTDSG, insofar as the consent includes the storage of cookies or access to information in the user's terminal device (e.g. device fingerprinting) as defined by the TTDSG. The consent can be revoked at any time. Data transfer to the USA is based on the standard contractual clauses of the EU Commission. Details can be found here:https://webflow.com/legal/eu-privacy-policy. Order processingWe have concluded an order processing agreement (AVV) for the use of the above-mentioned service. This is a contract required by data protection law, which ensures that it only processes the personal data of our website visitors in accordance with our instructions and in compliance with the DSGVO.

3. GENERAL NOTES AND MANDATORY INFORMATIONDATA PROTECTION
The operators of these pages take the protection of your personal data very seriously. We treat your personal data confidentially and in accordance with the statutory data protection regulations and this privacy policy. When you use this website, various personal data are collected. Personal data is data with which you can be personally identified. This privacy policy explains what data we collect and what we use it for. It also explains how and for what purpose this is done. We would like to point out that data transmission on the Internet (e.g. when communicating by e-mail) can have security gaps. Complete protection of data against access by third parties is not possible.

NOTE ON THE RESPONSIBLE OFFICE
The responsible party for data processing on this website is:Society for Mucopolysaccharidoses e.V.Herstallstraße 3563739 Aschaffenburg, GermanyPhone: 0 60 21 / 44636-0E-mail: info@mps-ev.de The controller is the natural or legal person who alone or jointly with others determines the purposes and means of the processing of personal data
(e.g. names, e-mail addresses, etc.).

STORAGE PERIOD
‍Unless a more specific storage period has been mentioned within this privacy policy, your personal data will remain with us until the purpose for processing the data no longer applies. If you assert a legitimate request for deletion or revoke your consent to data processing, your data will be deleted unless we have other legally permissible reasons for storing your personal data (e.g. retention periods under tax or commercial law); in the latter case, the data will be deleted once these reasons no longer apply.

‍LEGALLY REQUIRED DATA PROTECTION OFFICER
‍We have appointed a data protection officer for our company.

Daniel Burdach (honorary data protection officer).
Society for Mucopolysaccharidoses (MPS) e. V.
Herstallstraße 35, 63739 Aschaffenburg, Germany
Phone: 06021-44636-0
E-mail: info@mps-ev.de

‍NOTICE ON DATA TRANSFER TO THE USA AND OTHER THIRD COUNTRIES
‍We use, among other things, tools from companies based in the USA or other third countries that are not secure under data protection law. If these tools are active, your personal data may be transferred to these third countries and processed there. We would like to point out that no level of data protection comparable to that in the EU can be guaranteed in these countries. For example, US companies are obliged to hand over personal data to security authorities without you as a data subject being able to take legal action against this. It can therefore not be ruled out that US authorities (e.g. intelligence services) process, evaluate and permanently store your data located on US servers for monitoring purposes. We have no influence on these processing activities.

‍REVOCATION OF YOUR CONSENT TO DATA PROCESSING.
Many data processing operations are only possible with your express consent. You can revoke consent you have already given at any time. The legality of the data processing carried out until the revocation remains unaffected by the revocation.

RIGHT TO OBJECT TO DATA COLLECTION IN SPECIAL CASES AND TO DIRECT ADVERTISING (ART. 21 DSGVO) IF DATA PROCESSING IS CARRIED OUT ON THE BASIS OF ART. 6 ABS. 1 LIT. E OR F DSGVO, YOU HAVE THE RIGHT TO OBJECT TO THE PROCESSING OF YOUR PERSONAL DATA AT ANY TIME FOR REASONS ARISING FROM YOUR PARTICULAR SITUATION; THIS ALSO APPLIES TO PROFILING BASED ON THESE PROVISIONS. THE RESPECTIVE LEGAL BASIS ON WHICH PROCESSING IS BASED CAN BE FOUND IN THIS PRIVACY POLICY. IF YOU OBJECT, WE WILL NO LONGER PROCESS YOUR PERSONAL DATA CONCERNED UNLESS WE CAN DEMONSTRATE COMPELLING LEGITIMATE GROUNDS FOR THE PROCESSING WHICH OVERRIDE YOUR INTERESTS, RIGHTS AND FREEDOMS, OR THE PROCESSING IS FOR THE PURPOSE OF ASSERTING, EXERCISING OR DEFENDING LEGAL CLAIMS (OBJECTION UNDER ARTICLE 21(1) DSGVO). IF YOUR PERSONAL DATA 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. IF YOU OBJECT, YOUR PERSONAL DATA WILL SUBSEQUENTLY NO LONGER BE USED FOR THE PURPOSE OF DIRECT MARKETING (OBJECTION PURSUANT TO ARTICLE 21 (2) DSGVO).

RIGHT OF APPEAL TO THE COMPETENT SUPERVISORY AUTHORITY
‍In the event of breaches of the GDPR, data subjects shall have a right of appeal to a supervisory authority, in particular in the Member State of their habitual residence, their place of work or the place of the alleged breach. The right of appeal is without prejudice to other administrative or judicial remedies.

‍RIGHT TO DATA PORTABILITY.
You have the right to have data that we process automatically on the basis of your consent or in performance of a contract handed over to you or to a third party in a common, machine-readable format. If you request the direct transfer of the data to another controller, this will only be done insofar as it is technically feasible.

‍SSL OR TLS ENCRYPTION.
For security reasons and to protect the transmission of confidential content, such as orders or requests that you send to us as the site operator, this site uses SSL or TLS encryption. You can recognize an encrypted connection by the fact that the address line of the browser changes from "http://" to "https://" and by the lock symbol in your browser line.If SSL or TLS encryption is activated, the data you transmit to us cannot be read by third parties.

‍INFORMATION, DELETION AND CORRECTION
Within the framework of the applicable legal provisions, you have the right at any time to free information about your stored personal data, its origin and recipient and the purpose of data processing and, if applicable, a right to correction or deletion of this data. For this purpose, as well as for further questions on the subject of personal data, you can contact us at any time.

‍RIGHT TO RESTRICTION OF PROCESSING.
You have the right to request the restriction of the processing of your personal data. To do so, you can contact us at any time. The right to restriction of processing exists in the following cases:
‍
If you dispute the accuracy of your personal data stored by us, we usually need time to verify this. For the duration of the review, you have the right to request the restriction of the processing of your personal data.

If the processing of your personal data happened/is happening unlawfully, you have the right to request the restriction of data processing instead of erasure.If we no longer need your personal data, but you need it to exercise, defend or assert legal claims, you have the right to request the restriction of the processing of your personal data instead of erasure.

If you have lodged an objection pursuant to Art. 21 (1) DSGVO, a balancing of your and our interests must be carried out. As long as it has not yet been determined whose interests prevail, you have the right to request the restriction of the processing of your personal data.

If you have restricted the processing of your personal data, this data - apart from its storage - may only be processed with your consent or for the assertion, exercise or defense of legal claims or for the protection of the rights of another natural or legal person or for reasons of an important public interest of the European Union or a Member State.

OBJECTION TO ADVERTISING E-MAILS
We hereby object to the use of contact data published within the scope of the imprint obligation to send advertising and information material that has not been expressly requested. The operators of the pages expressly reserve the right to take legal action in the event of the unsolicited sending of advertising information, such as spam e-mails.

‍4. DATA COLLECTION ON THIS WEBSITESERVER-LOG FILES
The provider of the pages automatically collects and stores information in so-called server log files, which your browser automatically transmits to us. These are:
·      browser type and browser version
·      Operating system used
·      referrer URL
·      Host name of the accessing computer
·      Time of the server request
·      IP addressThis data is not merged with other data sources.

The collection of this data is based on Art. 6 para. 1 lit. f DSGVO. The website operator has a legitimate interest in the technically error-free presentation and optimization of its website - for this purpose, the server log files must be collected.

‍ENQUIRY BY E-MAIL, TELEPHONE OR FAX.
If you contact us by e-mail, telephone or fax, your inquiry including all personal data resulting from it (name, inquiry) will be stored and processed by us for the purpose of processing your request. We do not pass on this data without your consent. The processing of this data is based on Art. 6 (1) lit. b DSGVO, if your request is related to the performance of a contract or is necessary for the implementation of pre-contractual measures. In all other cases, the processing is based on our legitimate interest in the effective processing of the requests sent to us (Art. 6 (1) (f) DSGVO) or on your consent (Art. 6 (1) (a) DSGVO) if this has been requested. The data you send to us via contact requests will remain with us until you request us to delete it, revoke your consent to store it, or the purpose for storing the data no longer applies (e.g. after your request has been processed). Mandatory legal provisions - in particular legal retention periods - remain unaffected.

5. NEWSLETTER - NEWSLETTER DATA
If you wish to receive the newsletter offered on the website, we require an e-mail address from you as well as information that allows us to verify that you are the owner of the e-mail address provided and that you agree to receive the newsletter. Further data is not collected or only on a voluntary basis. We use this data exclusively for sending the requested information and do not pass it on to third parties. The processing of the data entered in the newsletter registration form is based exclusively on your consent (Art. 6 para. 1 lit. a DSGVO). You can revoke your consent to the storage of the data, the e-mail address and their use for sending the newsletter at any time, for example via the "unsubscribe" link in the newsletter. The legality of the data processing operations already carried out remains unaffected by the revocation. The data you provide for the purpose of receiving the newsletter will be stored by us or the newsletter service provider until you unsubscribe from the newsletter and will be deleted from the newsletter distribution list after unsubscribing from the newsletter or after the purpose has ceased to exist. We reserve the right to delete or block e-mail addresses from our newsletter distribution list at our own discretion within the scope of our legitimate interest pursuant to Art. 6 (1) lit. f DSGVO. After you have unsubscribed from the newsletter distribution list, your e-mail address will be stored by us or the newsletter service provider in a blacklist, if necessary, in order to prevent future mailings. The data from the blacklist will only be used for this purpose and will not be merged with other data. This serves both your interest and our interest in complying with legal requirements when sending newsletters (legitimate interest within the meaning of Art. 6 (1) lit. f DSGVO). The storage in the blacklist is not limited in time.You can object to the storage if your interests outweigh our legitimate interest.