Last Updated: October 12, 2020

This Privacy Policy (“Privacy Policy”) applies to Personal data (as defined below) collected through the website (hereafter “Website”).

HRA Pharma Rare Diseases (hereafter “HRA Pharma Rare Diseases” “we,” “our,” “us”), located at 200 avenue de Paris, 92320 Châtillon, France and registered with Trade Registry of Nanterre under the number 438 712 333, is the Controller for the Processing of your personal data Personal data for the purposes described below. HRA Pharma Rare Diseases will collect your Personal data in accordance with this Privacy Policy and applicable data protection and privacy laws, including but not limited to the California Consumer Privacy Act (hereafter “CCPA”).

We may change this Privacy Policy from time to time. If we make changes, we will notify you by revising the date at the top of this policy and, in some cases, we may provide you with additional notice (such as adding a statement to our website or sending you a notification). We encourage you to review this Privacy Policy regularly to stay informed about our information practices and the choices available to you.

The following terms “Personal data”, “Processing”, “Controller”, “Processor”, “Data Protection Authority” take the definitions given by Article 4 of the GDPR. For purposes of this Privacy Policy, “Personal data” will have the same definition as “Personal Information” under the CCPA.











What Personal data is collected?

We collect information you provide directly to us. For example, HRA Pharma Rare Diseases collects Personal data when you submit such information to us via the Website and the forms available on the Website, communicate with us via third-party platforms, request customer support, or otherwise communicate with us. The types of Personal data we may collect include your name, email address, location, and any other information you choose to provide.

When choosing to complete and submit a form available on the Website,

Personal data may be collected. Please note, the completion of a form found on our Website is not mandatory. Depending on the form, the collected data is:

  • Contact Form: You may complete this form if you have a suggestion or would like to contact us on a particular subject, such as a medical information or product request, partnership or media requests, product questions or complaints, or pharmacovigilance issues. The categories of Personal data processed are the following: your name, email address, the content of your message (which may include medical information if relevant to your message), and our corresponding answer (if we deem appropriate).

These forms are at your disposal in case you want to contact us. We would like to remind you that their completion is not mandatory.

Please note, you may reduce the amount of Personal data we collect about you by limiting the amount of Personal data you provide through the forms to the fields denoted as “mandatory.”


When you access or use our Website or otherwise transact business with us, we automatically collect certain information corresponding to the following categories:

  • Activity Information: We collect information about your activity on our Website, such as the date and time you browsed the Website, length of visit to the Website, and pages most frequently accessed.
  • Device and Usage Information: We collect information about how you access our Website, including data about the device and network you use, such as your hardware model, operating system version, mobile network, IP address, unique device identifiers, browser type, and the website from which you access our Website.
  • Location Information: In accordance with your device permissions, we may collect information about the precise location of your device. You may stop the collection of precise location information at any time (see the YOUR CHOICES section below for details and our Cookies policy).
  • Information Collected by Cookies and Similar Tracking Technologies: We (and our service providers) use tracking technologies, such as cookies and web beacons, to collect information about you. Cookies are small data files stored on your hard drive or in device memory that help us improve our Website and your experience, see which areas and features of our Website are popular, and count visits. Web beacons (also known as “pixel tags” or “clear GIFs”) are electronic images that we use on our Website and in our emails to help deliver cookies, count visits, and understand usage and campaign effectiveness. For more information about cookies and how to disable them, see the YOUR CHOICES section below and our Cookies policy.



We may derive information or draw inferences about you based on the information we collect.  For example, we may make inferences about your location based on your IP address or infer that you are interested in products for particular disease states based on your browsing behavior.



Most web browsers are set to accept cookies by default. If you prefer, you can usually adjust your browser settings to remove or reject browser cookies. Please note that removing or rejecting cookies could affect the availability and functionality of our Website. Please refer to our Cookie setting page to accept or reject cookies – [cookie_settings]. For more information, please review our Cookie Policy.

Communications Preferences

You may opt out of receiving promotional emails from HRA Pharma Rare Diseases by following the instructions in those communications. If you opt out, we may still send you non-promotional emails, such as those about product updates or our ongoing business relations.



We allow others to provide analytics services and serve advertisements on our behalf across the web. These entities may use cookies, web beacons, device identifiers, and other technologies to collect information about your use of our Website and other websites and applications, including your IP address, web browser, mobile network information, pages viewed, time spent on pages or in mobile apps, links clicked, and conversion information. This information may be used by HRA Pharma Rare Diseases and others to, among other things, analyze and track data, determine the popularity of certain content, deliver advertising and content targeted to your interests on our Website and other websites, and better understand your online activity.  For more information about interest-based ads, or to opt out of having your web browsing information used for behavioral advertising purposes, please click here – [cookie_settings].




What are the purposes for Processing and the legal basis?

Your Personal data will be processed for the following purposes and in accordance with the legal basis set out below. The table below will also provide you with categories of recipients of your Personal data.







Managing and providing the Website (please see our Cookie Policy) Performing statistics on the use of the Website (please see our Cookie Policy) to improve the quality of our website


Our legitimate interest to provide a Website; Your consent


Consultants working for HRA Pharma Rare Diseases

Upwards Group Limited


Users of the Contact Form

Answering your request or your comment


Our legitimate interest to develop or maintain our commercial relationship and comply with our legal obligations as the case may be


Consultants working for HRA Pharma Rare Diseases

Direct Success Inc

AllianceRx Walgreens Prime



In addition to the categories of recipients above mentioned, HRA Pharma Rare Diseases will transmit your Personal data to our authorized Processors which will process your Personal data on behalf of HRA Pharma Rare Diseases. HRA Pharma Rare Diseases will also communicate your Personal data to relevant authorities as required by applicable laws.


Regarding your Personal data, the retention period is fixed according to the purpose of the Processing, as follows:

  • Managing and providing the Website: 10 years
  • Performing statistics on the use of the Website: 10 years
  • Managing your question or comment: the time needed to process your request and then it is stored according to applicable laws on pharmacovigilance or quality regulation for instance



HRA Pharma Rare Diseases implements appropriate technical and organizational measures to ensure an appropriate level of security regarding the risk incurred and protect your Personal data against unauthorized access, disclosure, alteration or destruction.


What are your rights? How can you exercise them?


Under applicable data protection and privacy laws, you have a number of rights with regard to your Personal data. Those rights are as follows:



You can ask to see the Personal data HRA Pharma Rare Diseases holds about you. In connection with a request, HRA Pharma Rare Diseases may request specific information about you to enable us to confirm your identity and right access, as well as search for and provide you with the Personal data HRA Pharma Rare Diseases holds about you. In the event we cannot provide you with access to your Personal data (for instance, Personal data may have been destroyed, erased or made anonymous), we will inform you of the reasons why.



HRA Pharma Rare Diseases works to ensure that Personal data in its possession is accurate, current and complete. If you believe that the Personal data HRA Pharma Rare Diseases holds on you is incorrect, inaccurate, incomplete or outdated, you may request the revision or correction of that information. If it is determined that Personal data is inaccurate, incomplete or outdated, we will revise it.



If you have provided consent for the Processing of your data, you have the right to withdraw that consent at any time which will not affect the lawfulness of the Processing before your consent was withdrawn.



You have the possibility to object to the Processing of your Personal data including profiling, on grounds relating to your particular situation as provided by data protection laws. When profiling is related to direct marketing you always have a right to object.



You have the right to obtain from us restriction of Processing in certain instances as provided by data protection laws.



You have the right to receive the Personal data, which you have provided to us, in a structured, commonly used and machine-readable format when the Processing is based on your consent or on a contract. You also have the right to ask us to transmit it to another data controller of your choice.



You have the right to lodge a complaint to the Data Protection Authority, if you believe that HRA Pharma Rare Diseases has not complied with the requirements of the GDPR with regard to your Personal data.


If you wish to exercise one of these rights, please send a request in this regard to our Group Data Protection Officer, stating both your name and surname, together with a copy of your identity card:

  • Via the email address dataprivacy@hra-pharma.comBy post to HRA Pharma Rare Diseases, 200 avenue de Paris, 92320 Châtillon, FranceIf you have unresolved concerns you also have the right to complain to the Data Protection Authority in the country where you live or work, or to the Data Protection Authority of the place of the alleged infringement.




We use the information we collect to provide, maintain, and improve our products and services, including our Website.  We also use the information we collect to:


  • Process and send you requested information and recall notices;
  • Personalize and improve your experience on our Website;
  • Send you technical notices, security alerts, and support and administrative messages;
  • Respond to your comments and questions and provide customer service;
  • Communicate with you about products, services, and events offered by HRA Pharma Rare Diseases and others and provide news and information that we think will interest you (see the YOUR CHOICES section for information about how to opt out of these communications at any time);
  • Provide and administer our patient and caregiver programs;
  • Monitor and analyze trends, usage, and activities in connection with our Website, products, and services;
  • Personalize the advertisements you see on third-party platforms and websites (for more information, see the ADVERTISING AND ANALYTICS section);
  • Detect, investigate, and prevent security incidents and other malicious, deceptive, fraudulent, or illegal activity and protect the rights and property of HRA Pharma Rare Diseases and others;
  • Debug to identify and repair errors on our Website;
  • Comply with our legal and financial obligations; and
  • Carry out any other purpose described to you at the time the information was collected.




We share Personal data in the following circumstances or as otherwise described in this Privacy Policy:


  • We share Personal data with vendors, service providers, and consultants that need access to Personal data in order to perform services for us, such as companies that assist us with web hosting, customer service, and marketing and advertising.
  • When applicable if you choose to use integrations we offer on our Website, such as sharing your location through our Google Maps integration, we may share certain information with the integration partners.
  • We may disclose Personal data if we believe that disclosure is in accordance with, or required by, any applicable law or legal process, including lawful requests by public authorities to meet national security or law enforcement requirements.
  • We may share Personal data if we believe that your actions are inconsistent with our user agreements or policies, if we believe that you have violated the law, or if we believe it is necessary to protect the rights, property, and safety of HRA Pharma Rare Diseases, our users, the public, or others.
  • We share Personal data with our lawyers and other professional advisors where necessary to obtain advice or otherwise protect and manage our business interests.
  • We may share Personal data in connection with, or during negotiations concerning, any merger, sale of company assets, financing, or acquisition of all or a portion of our business by another company.
  • Personal data is shared between and among HRA Pharma Rare Diseases and our current and future parents, affiliates, and subsidiaries and other companies under common control and ownership.
  • We share Personal data with your consent or at your direction.

We also share aggregated or de-identified information that cannot reasonably be used to identify you.



The California Consumer Privacy Act or “CCPA” (Cal. Civ. Code § 1798.100 et seq.) and the Shine the Light law (Cal. Civ. Code § 1798.83) afford consumers residing in California certain rights with respect to their Personal data. If you are a California resident, this section applies to you.

California Consumer Privacy Act

In the preceding 12 months, we have collected the following categories of Personal data: identifiers, categories of personal information described under Cal. Civ. Code Section 1798.80(e), characteristics of protected classifications under California or United States’ federal law, internet or other electronic network activity information, geolocation data, professional or employment-related information, education information, and inferences. For details about the precise data points we collect and the categories of sources of such collection, please see the COLLECTION OF PERSONAL DATA section above. We collect Personal data for the business and commercial purposes described in the USE OF INFORMATION section above. In the preceding 12 months, we have disclosed the following categories of Personal data for business purposes to the following categories of recipients:


Category of Personal Data

Categories of Recipients

Identifiers, such as name, postal address, email address, and IP address

Advertising networks, internet service providers, data analytics providers, customer support partners

Categories of personal information described under Cal. Civ. Code Section 1798.80(e), such as

physical characteristics or description, address, telephone number, education, employment, or medical information

Advertising networks, internet service providers, data analytics providers, customer support partners



Internet or other electronic network activity information, such as browsing history, search history, and information related to an individual’s interaction with an internet website, application, or advertisement

Advertising networks, internet service providers, data analytics providers

Geolocation data

Advertising networks, internet service providers, data analytics providers

Inferences, such as information used to create a profile about an individual’s preferences

Advertising networks, internet service providers, data analytics providers


Sale of Personal Data: California law requires that we provide transparency about Personal data we “sell,” which for the purposes of the CCPA broadly means scenarios in which we have shared Personal data with partners in exchange for valuable consideration. While we do not provide Personal data about you to other companies for money, we do allow our advertising partners to collect identifiers and internet or other electronic network activity information via our Website to show you advertisements that are targeted to your interests. To opt out of having your Personal data used for targeted advertising purposes, please visit the “Do Not Sell My Personal Information” webpage to make an opt-out request.

Your Rights: Subject to certain limitations, you have the right to (1) request to know more about the categories and specific pieces of Personal data we collect, use, sell, and disclose (2) request deletion of your Personal data, and (3) not be discriminated against for exercising these rights. You may make these requests by calling We will verify your request by asking you to provide information related to your recent interactions with us, such as a copy of your ID card. We will not discriminate against you if you exercise your rights under the CCPA.

If we receive your request from an authorized agent, we may ask for evidence that you have provided such agent with a power of attorney or that the agent otherwise has valid written authority to submit requests to exercise rights on your behalf. If you are an authorized agent seeking to make a request, please CONTACT US.


Shine the Light

California law permits residents of California to request certain details about how their information is shared with third parties for direct marketing purposes:


If you have any questions about this Privacy Policy, please contact us at


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