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Privacy Policy

This Privacy Statement is drafted and managed by the Huntington Study Group (hereinafter “Data Controller” or “HSG”). HSG has its headquarters at 95 Allens Creek Road, Building 1, Suite 132, Rochester, New York 14618, USA.

Scope of the Privacy Statement.

HSG strives to improve the lives of individuals impacted by Huntington’s disease through research, education, and collaboration. In pursuit of this objective, HSG may process personal data of natural persons (hereinafter “Data Subject” or “you”).

HSG is committed to protecting your privacy and developing technology that gives you a powerful and safe online experience. This Privacy Statement applies to the HSG website (https://huntingtonstudygroup.org), and any website(s) or mobile application(s) owned and/or controlled by or on behalf of HSG and governs data collection and processing.

This statement complies with the applicable legislation governing personal data processing and electronic communications, including Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons regarding the processing of personal data (hereinafter “GDPR” or “General Data Protection Regulation”). It contains important information on how and for what purposes HSG, as a data controller, collects and processes personal data, and clarifies which rights you can exercise as a data subject.

Collection of Personal Data.

Personal data can be defined as any information by which a natural person can be directly or indirectly identified.

HSG may collect personal data, such as your e-mail address, name, home or work address or telephone number. HSG may also collect user-submitted health-related information such as symptoms, diagnosis, and medical condition. HSG may also collect demographic information such as your ZIP code, age, gender, preferences, interests, and favorites.

HSG does not collect or process special categories of personal data, such as health data, without your explicit consent.

HSG may also automatically collect information about your computer or mobile device hardware and software when you access the HSG website(s) or mobile application(s). This information can include: your IP address, browser type, domain names, operating system, access times and referring website addresses. This information is used by HSG for the operation of the services it provides, to maintain quality of HSG’s services, and to provide general statistics regarding use of the HSG website(s) and mobile application(s).

Processing of Personal Data.

HSG may collect and use your personal data to operate the HSG website and deliver the services you have requested. HSG may also use your personal data to inform you of other products or services available from HSG and its affiliates. HSG may also contact you via surveys to conduct research about your opinion of current services or of potential new services that may be offered.

You may provide us with your personal data in the context of the following activities, for the corresponding purposes and based on the stated legal grounds:

  • Contact form or correspondence: by filling in the contact form on the website, you consent to HSG processing your name, email address and your query or message. If you contact us directly (by email, phone, or letter), we will process your contact details and the content of this correspondence. We only use this information to adequately address your questions or requests.
  • Application forms: by completing one of the application forms available on the website, you consent to HSG processing your name, email address, phone number, credentials, CV, as well as the content of your correspondence with us. We use this information solely for the purpose of managing your application.
  • Sales and marketing: HSG may use your name and contact details for direct marketing campaigns to inform you about other products and services HSG and its affiliated provide, and to contact potential future customers. We may also use the data to make targeted offers, e.g. via email or to display an advertisement on our own website. We will send these communications or place the advertisements based on the legitimate interest of HSG, if we find that you are interested in, or could benefit from, our services or products.
  • Surveys: based on the legitimate interest of HSG, we may use your contact details to assess, evaluate and improve the services we offer. For this purpose, we may send you questionnaires or customer surveys.
  • Events and trainings: when you register for one of our events or trainings, we will ask you to provide certain information in order to participate in that particular event or training. We will usually ask you for your name, e-mail address, job title and the organization you work for. We collect this information based on your consent to complete your registration to ensure the best event experience for everyone.
  • Clinical trials: in the event you participate, whether as a subject or as a member of staff, in any clinical research with HSG, the applicable informed consent and other related documentation pertaining to the research will outline how your study data will be used.
  • Delivery of products and services: when you buy or purchase certain products or services from HSG, we collect your contact details and billing information. This is for the purpose of delivering our services and managing our (customer) relationship and based on your agreement with HSG.
  • Other relationships: we collect contact details of our current or future suppliers and partners. We process this information to enter into agreements and manage our relationships or partnerships. This processing is therefore based on the conclusion and performance of our contracts and business relationships.
  • Cookies: HSG keeps track of the HSG websites and pages our customers visit to determine what HSG services are the most popular. This data is used to deliver customized content within HSG to customers whose behavior indicates that they are interested in a particular subject area. This processing is performed by using cookies. For more information on the use of cookies, please consult our Cookie Statement.

Disclosure to Third Parties.

HSG considers your personal data to be confidential and undertakes to process it only in a manner compatible with the purposes for which it was originally collected.

HSG does not sell, rent or lease its customer lists to third parties. HSG may, from time to time, contact you on behalf of external business partners about a particular offering that may be of interest to you. In those cases, your personal data is not transferred to the third party.

In addition, HSG may share data with trusted partners to help us perform statistical analysis, send you email or postal mail, provide customer support, or arrange for deliveries. All such third parties are limited to processing your personal data in accordance with our instructions and, if necessary, a data processing agreement will be concluded so that they are obliged to comply with all obligations required by applicable data protection laws. In any case, they will be prohibited from using your personal data except to provide these services to HSG, and they will be required to maintain the confidentiality of your personal data.

Transfers of personal data outside the EEA/UK.

Regarding transfers and processing of your personal data outside the European Economic Area (hereinafter “EEA”) or the United Kingdom (hereinafter “UK”), your data will only be transferred to parties in third countries if permitted under applicable data protection laws. We guarantee appropriate safeguards to ensure that your rights are also respected by the data recipients outside the EEA/UK in accordance with an adequate level of data protection, as established in accordance with Art. 45 (EU/UK) GDPR.

The transfer of your personal data outside the EEA/UK to countries that do not ensure adequate levels of protection will be performed only after conclusion between the Controller and the recipient of the data of specific agreements, containing safeguard clauses and appropriate safeguards for the protection of your personal data which are so-called “standard contractual clauses” specified in the regulations made by the competent authorities (such as the European Commission or the UK Secretary of State), or if the transfer is necessary for the conclusion and execution of an agreement between You and the Controller or for the management of your requests.

Rights of EEA/UK data subjects.

At all times, as a data subject, you have the possibility to exercise your rights as described in the EEA/UK General Data Protection Regulation. You can exercise the following rights:

Right of access to your personal data.

You have the right to request access to your personal data at any time, and to request a copy of the personal data that HSG collects about you.

Right to rectification.

You have the right to have incorrect personal data corrected or incomplete personal data completed.

Right to data erasure (“right to be forgotten”).

You may request to have your personal data deleted from HSG systems.

The request to erase your personal data cannot always be granted due to contractual or legal obligations. HSG will observe these obligations when responding to your request.

Right to object.

You have the right to object to the processing of your personal data if the processing is based on the legitimate interests of HSG or on grounds of public interest. We will stop processing your data unless we can demonstrate compelling legitimate grounds for further processing or for the exercise of legal claims. You may also object to the processing of your personal data for direct marketing purposes, which means that your personal data will no longer be processed for such purposes.

Right to withdraw your consent.

For the processing of your personal data collected by HSG with your consent, you may withdraw your consent at any time. For example, you can unsubscribe from “future research updates” at any time. However, withdrawing your consent does not apply to processing operations previously carried out by HSG.

Right to restriction of processing.

In certain cases, you have the right to obtain the restriction of the processing of your personal data. We will continue to store your data, but we will limit its use. For example, you can make this request if you believe your personal data is inaccurate or if the processing by HSG is not justified. We only have to fulfil these requests in specific cases, as stipulated by law.

Right to data portability.

You have the right to obtain your personal data processed by HSG in a structured, commonly used and machine-readable format and/or to have such data transmitted to another controller.

The above rights can be exercised free of charge by completing our Request Form and sending it via e-mail to privacy@hsglimited.org. We undertake to respond to your request within one month of receipt. We may first request additional information to confirm your identity and ensure that the request comes from you.

Right to lodge a complaint.

If at any time you believe that HSG is infringing your privacy, you have the right to lodge a complaint with a supervisory authority. You will find a list of supervisory authorities and their contact details here.

Retention of your Personal Data.

HSG recognizes the importance of protecting your personal data. We will retain your personal data for no longer than strictly necessary to fulfil the purposes for which we received the data, or for the performance of a contract, or to comply with a legal obligation. The retention periods differ in terms of the type of processing activity and the purpose for which the personal data was collected.

Personal data that we collect based on your consent is retained for as long as your consent remains valid.

We keep customer and supplier information for as long as reasonably necessary to perform our agreements, to comply with our legal obligations (such as accounting and tax obligations) and to resolve disputes or enforce agreements.

In all cases, personal data may be retained for a longer period if there is a legal or regulatory reason to do so, or for a shorter period if you object to the processing of your personal data and there is no longer a legitimate reason to retain it.

We guarantee that only limited access will be provided to archived data, and that your personal data will be deleted or anonymized once the retention period has expired.

Security and Confidentiality of your Personal Data.

HSG has implemented technical and organizational security measures to prevent the destruction, loss, forgery, alteration, unauthorized access, or disclosure of your personal data to third parties and any other unauthorized processing of such data.

We have made every effort to ensure the confidentiality, integrity and availability of the information systems and services that process personal data. These measures include physical and operational security measures, access control, awareness policies and confidentiality clauses. All our employees and third parties engaged by us are obliged to respect the privacy and security of your personal data.

Contact Details.

If you have any comments or questions about the information in this statement, or any other issues relating to HSG’s processing of your personal data, please contact us at privacy@hsglimited.org.

If you prefer to contact us by post, please do so at the following address:

Huntington Study Group

95 Allens Creek Road, Building 1, Suite 132, Rochester

New York 14618, USA

Changes to this Privacy Statement.

We may amend or update this Privacy Statement from time to time to reflect changes in our practices regarding the processing of your personal data or changes in applicable legislation. We will do so by posting the updated version on this website. When we publish changes to our Privacy Statement, we will change the date and version number of the “last update” of our Privacy Statement. Significant changes will be notified on our homepage. Nevertheless, we encourage you to regularly read our Privacy Statement.