Privacy Policy

Website Privacy Policy

Effective: October 20, 2021

Novartis Gene Therapies, a company owned by Novartis, focusses on bringing gene therapy from the laboratory and into clinical settings for patients and families affected by rare and life-threatening neurological genetic diseases. This Privacy Policy describes the ways in which we, Novartis Gene Therapies (registered at Northwood, Santry,Dublin 9, Republic of Ireland) and all of its subsidiaries and branch offices collect, hold and use information about individuals who visit this website (“Personal Data”). We invite you to carefully read this Privacy Statement, which sets out in which context we are processing your Personal Data and explains your rights and our obligations when doing so. Novartis Gene Therapies is responsible for the processing of your Personal Data as it decides why and how it is processing such data, thereby acting as the “controller”. It may exercise this responsibility alone or jointly with other companies in the Novartis Gene Therapies or Novartis group.

1. How do we deal with information from individuals under the age of 13?

Our Services are not directed at children. We do not knowingly collect any personal information about the children under the age of 13 on our website or for the purposes mentioned in this Privacy Policy. If Personal Information about children has been mistakenly provided to us and you would like to request that such Personal Information be removed, please contact us by using the contact details provided below.

2. What Personal Data doe we process and for which purposes?

Most of our services do not require any form of registration, allowing you to visit our site without telling us who you are. However, some services may require you to provide us with Personal Data, which may include your direct identifiers, such as name, birth date, email address or telephone number. We may collect and use Personal Data to provide you with products or services, to bill you for products and services you request, to market products and services which we think may be of interest to you, or to communicate with you for other purposes which are evident from the circumstances or about which we inform you when we collect Personal Data from you.

We will not process your Personal Data if we do not have a proper justification foreseen in the law for that purpose. Therefore, we will only process your personal data if:

  • we have obtained your prior consent;
  • the processing is necessary to perform our contractual obligations towards you or to take pre-contractual steps at your request;
  • the processing is necessary to comply with our legal or regulatory obligations;
  • the processing is necessary to protect your vital interests or those of another person; or
  • the processing is necessary for our legitimate interests and does not unduly affect your interests or fundamental rights and freedoms.

2.1. Information that you provide to us voluntarily

2.1.1. Registration of user accounts

In order to use some Services (or individual parts of them) it may be necessary to create a user account by registering beforehand. This is the case, for example, when you visit websites whose content is only accessible to licensed medical specialists or accredited press representatives. When registering, you have to provide your name, email address, loginID, security questions & answers, encrypted passwords, postal address, telephone number and, if applicable, your license to practice medicine or accreditation.

We process and save the Personal Data provided during registration exclusively to enable you to access the content specifically relevant to you. The legal basis for processing your Personal Information may be fulfilment of obligations under an agreement with you or consent from you.

2.1.2. Contact requests, customer support or feedback

For inquiries via our contact form, you must provide your name, postal address, e-mail address, telephone number, the reason for contacting you and your message. You may provide your social media profile information including name, email address, contact details, comments and reactions when you interact with us on social media platforms or using your social media login credentials to authenticate on our website.

We process and save the Personal Data provided in the contact request only to process and answer your request regarding our products and services and to get in touch with you.

The legal basis for processing your Personal Data is the fulfillment of our contractual obligations to communicate any relevant concerns about which you have contacted us.

2.1.3. Newsletters

When subscribing for our newsletter service, you will need to provide your name, email address and/or postal address.

Insofar as you have given us your consent to data processing when registering for the newsletter service, we process and save the Personal Data provided when subscribing for the newsletter only to provide the newsletter service and you in accordance with the newsletter service you have subscribed to inform about Novartis Gene Therapies events, products, services and / or promotions.

If you have consented to this when subscribing for the newsletter, we can also analyze your user behavior when opening the relevant newsletter and process the data collected for the personalization of future newsletters and other promotional communication.

The legal basis for the processing of your Personal Data is your consent.

2.1.4. Orders and services

When ordering products and services via the website (such as information materials, brochures, etc.), you will need to provide your name, email address and postal address and, if applicable, your payment details.

We process and save the Personal Data provided when placing an order in order to provide you with the products and services you have ordered and for our business purposes including improving our products and services and tailoring your experiences when interacting with the services. The legal basis for processing your personal data is fulfilment of contractual obligations and our legitimate interests.

2.1.5. Tracking and monitoring adverse events

Novartis is legally obliged to inform itself about undesirable side effects and interactions, the lack of drug effectiveness, quality complaints and / or other aspects related to the safety or quality of Novartis products. Please use to provide Novartis with information about Novartis products. Novartis will evaluate and review your information (which may include information about your state of health, side effects and, if applicable, your name). For this purpose, Novartis may also contact you if you have any questions.

Novartis is also legally obliged to report significant side effects to the responsible health authorities, whereby we only pass on your information in pseudonymous form so that no information that directly identifies you is passed on. We can also share this information with other Novartis Group companies, provided that they are themselves obliged to report to the health authorities responsible for them.

The legal basis for the processing of your Personal Information is the fulfillment of our legal obligations or the safeguarding of our legitimate interests; which consist in particular of ensuring high safety and quality standards for Novartis products; or your consent.

2.2. Information that is collected automatically

2.2.1. Social Media Listening

We may also collect Personal Information that you made publicly available on public social media platforms (including blogs, forums etc.), related to Novartis, Novartis products, and more in general about drugs and diseases. This activity, called “social media listening”, is based on our legitimate business interests, for example to (i) have a better understanding of how certain key audiences like healthcare professionals or patients experience certain diseases or react to the use of Novartis products, (ii) have a better understanding of Novartis’ reputation as well as other market trends, (iii) identify key-stakeholders, in particular bloggers and social media influencers, and to initiate contact with them. This may include your Personal Information in form of comments, messages, blogs, photos and videos, although we will take steps to limit this Personal Information to the minimum necessary and keep it for no longer than necessary for the social media listening activity. If you want to limit further who can see your information, we recommend that you use the privacy settings available to you on such platforms.

When you share your personal information on a public social media platform, we suggest you also familiarize yourself with the privacy policy of that specific platform as these platforms are not owned and managed by Novartis.

2.2.2. Website usage analytics

We may also collect and process Personal Data about your visit to this website, such as the pages you visit, the website you came from and the searches you perform. We may use such information to help improve the contents of the site and to compile aggregate statistics about people using our site for our internal usage statistics and market research purposes. In doing this, we may install „cookies” or similar technologies that collect the domain name of the user, your internet service provider, your operating system, and the date and time of access. Cookies are created and stored on the user’s computer, phone or other devices when the user’s browser loads a particular website. Every time the user goes back to the same website, the browser retrieves and sends this „cookie” file to the website. Cookies are useful because they serve key purposes like helping a website remember your preferences and settings, performing analytics to improve services, serving you relevant content or advertisements and authenticating you on the websites. Cookies do not damage your computer. You can set your browser to notify you when you receive a cookie, this will enable you to decide if you want to accept it or not. You can also refuse cookies altogether. However, if you do not accept our cookies, you may not be able to use all functionalities of our website. When you visit our websites, you may be presented with a cookie-setting banner that allows you to manage the settings and accept or deny the cookies. It is legally permitted to store cookies on your machine if they are essential to the operation of the website, but for all other types of cookies we need your permission to do so. On Novartis Gene Therapies websites, you have the option to consent to the use of cookies while visiting the website for the first time when a cookie banner will be shown or manage these settings anytime later by clicking the Cookie Settings link in the footer of the website. These cookie settings give you the option of accepting or denying your consent to every category of cookies (with the exception of the necessary cookies which are always active). Please refer to our Cookie Settings to learn more about what types of cookies we use (the purpose they serve, their lifespan, and their provenance) and how you can manage your preferences.

Certain of our Services, including websites, may use the web analysis service “Google Analytics” from Google LLC, of 1600 Amphitheatre Parkway, Mountain View, CA 94043, USA (“Google”) to optimize them. Google uses this information obtained by the cookie to save a profile of which pages you have visited within a session. The information generated by the cookie about the use of the Services is transmitted to Google servers and stored there. In order to increase the security of your personal data, we use the „anonymize IP” function or other features provided by Google to keep you anonymous. For more information on how IP anonymization works, click

Google will use this information on our behalf to evaluate your use of the website, to compile reports on website activity for us and to provide us with other services relating to website activity and internet usage. Novartis uses the data received from Google Analytics for business planning, for its own business activities and for marketing measures in order to better understand how the content of our web services and the associated experience can be improved.

Certain of our websites also use OneTrust cookies to enable you to manage the cookies easily and help us to obtain your consent for our placement and use of cookies on your device. We need these cookies to remember the choices that you have made regarding cookie settings. 

The legal basis for the processing of your Personal Data when we do website analytics is your consent or our legitimate business interests.

2.2.3. Other tracking technologies

We may use cookies or other tracking technologies (also known as action tags, single-pixel GIFs, clear GIFs, invisible GIFs and 1-by-1 GIFs) provided by third party advertisement companies to provide relevant advertisements (interactive or non-interactive) to you based on your interests or browsing history. Typically, we use the services of social media companies and other third-party advertisement companies to collect information like your browser details, unique client ID etc. so that we may serve you ads on our websites and on other websites you may use. Please refer to our Cookie Settings to learn more about our marketing or advertisement cookies and manage your preferences.

Our Services, including websites, may use Google Tag Manager (“GTM”) which is a tag management system operated by Google to manage JavaScript and HTML tags used for tracking and analytics on websites. Tags are small code elements that, among other things, are used to measure traffic and visitor behaviour: to understand the effect of online advertising and social channels; to set up remarketing and orientation towards target groups; and to test and optimize websites. GTM makes it easier for us to integrate and manage our tags.

The legal basis for the processing of your Personal Data is your consent or our legitimate business interests.

2.2.4. Website preferences and security

We may collect certain information about you like your IP address, unique device identifiers like Media Access Control (MAC) address, computer type (Windows or Mac), browser type and version, screen resolution, operating system name and version. We may also derive your location information from your IP address. We use this information to secure our websites and network systems and to improve our services by recording your preferences, maintaining service levels, diagnosing and troubleshooting technical issues.

The legal basis for the processing of your Personal Information is our legitimate business interests.

We may combine, aggregate, or anonymize Personal Information with data we may collect from or about you from other sources, such as public databases, providers of demographic information, joint marketing partners, public social media platforms (data made public by you), and other third parties.

We may use your data for our business purposes, including audits, monitoring and prevention of fraud, infringement, and other potential misuse of our products and services, and for modifying our services.

Also, we may use your Personal Information:

  • if we are required to do so because of an applicable law, requests from public and government authorities (including court order, subpoena, or governmental regulation), even outside your country of residence;
  • if we need to enforce our terms and conditions;
  • when we believe in good faith that the use of Personal Information is necessary to protect legal rights, the security or integrity of this website;
  • to protect your safety or the safety of others;
  • as part of any criminal or other legal investigation or proceeding in your country or in other countries; or,
  • to the extent reasonably necessary for development of or to proceed with the negotiation or completion of a corporate or commercial transaction.

We do not usually collect Sensitive Personal Information for the purposes other than monitoring and management of adverse events where we have a regulatory obligation. You are requested to not disclose your Sensitive Personal Information to us unless we specifically ask for it (e.g., national identification card numbers, information related to racial or ethnic origin, political opinions, religion or philosophical beliefs, health, sex life or sexual orientation, criminal background, or trade union membership, or biometric or genetic data for the purpose of uniquely identifying an individual).

3. When and to whom we disclose your Personal Data

This Privacy Policy describes the circumstances in which we may share your Personal Data. We may share your Personal Data with other Novartis Gene Therapies and Novartis subsidiaries and affiliates worldwide to exchange information and maintain databases in different countries. We also may transfer Personal Data to third parties who act on our behalf, for further processing in accordance with the purpose(s) for which the data were originally collected or may otherwise be lawfully processed, such as services delivery, evaluating the usefulness of our Services, marketing, advertising, data management, or technical support.

We will not sell, share, or otherwise transfer your personal information to third parties other than those indicated in this Privacy Policy.

In the course of our activities and for the same purposes as those listed in this Privacy Policy, your Personal Data can be accessed by, or transferred to the following categories of recipients on a need to know basis to achieve such purposes:

  • our personnel (including personnel, departments or other companies of Novartis Gene Therapies and the Novartis group);
  • our independent agents or brokers (if any);
  • our other suppliers and services providers that provide services and products to us;
  • our IT systems providers, cloud service providers, database providers and consultants;
  • any third party to whom we assign or novate any of our rights or obligations; and
  • our advisors and external lawyers in the context of the sale or transfer of any part of our business or its assets.

These third parties have contracted with us to only use Personal Data for the agreed upon purpose, and not to sell Personal Data to third parties, and not to disclose it to third parties except as may be permitted by us, as required by law, or as stated in this Privacy Policy.

We may disclose your Personal Data to a third party in the event that the business or a part of it and the customer data connected with it is sold, assigned or transferred, in which case we would require the buyer, assignee or transferee to treat Personal Data in accordance with this Privacy Policy.

Also, we may disclose your Personal Data to a third party if we are required to do so because of an applicable law, requests from public and government authorities (including court order, subpoena, or governmental regulation), even outside your country of residence; if we need to enforce our terms and conditions; when we believe in good faith that the disclosure is necessary to protect legal rights, the security or integrity of this website; to protect your safety or the safety of others; as part of any criminal or other legal investigation or proceeding in your country or in other countries; or to third parties, advisors, and other entities to the extent reasonably necessary for development of or to proceed with the negotiation or completion of a corporate or commercial transaction.

Your Personal Data may also be processed, accessed, or stored in countries outside the European Union. Such countries may offer a different level of protection of Personal Data. If we transfer your Personal Information to external companies in other jurisdictions, we will make sure to protect your Personal Data by applying the level of protection required under applicable data privacy laws by implementing adequate technical and organisational measures. In the event that your Personal Data is transferred to a service provider based in a third country (countries outside the European Union that do not have a level of data protection comparable to the data protection law of the European Union, as determined by a competent data protection authority) and processed there, Novartis Gene Therapies ensures the protection of your Personal Data by means of Standard Contractual Clauses or EU Model Clauses or another method in accordance with applicable law. Should these Standard Contractual Clauses in the future be declared null and void and/or be revised by the European Commission, we will adopt other applicable and/or approved instruments to provide for appropriate safeguards required for the third country transfers and enter into such agreed instruments in a written and legally binding form.

For transfers of Personal Data among Novartis subsidiaries and affiliates, Novartis has adopted Binding Corporate Rules, a system of principles, rules, and tools, authorized by European law, to regulate the transfer of Personal Information outside the EEA and Switzerland. Read more about the Novartis Binding Corporate Rules by clicking here.

4. How do we protect your Personal Data

We have implemented appropriate technical and organisational measures designed to provide an adequate level of security and confidentiality to your Personal Data.

The purpose of these measures is to protect Personal Data against accidental or unlawful destruction or alteration, accidental loss, unauthorized disclosure or access and against other unlawful forms of processing.

5. What are your rights and how can you exercise them?

Whenever we process Personal Data, we take reasonable steps to keep your Personal Data accurate and up-to-date for the purposes for which they were collected. We will provide you with the ability to exercise the following rights under the conditions and within the limits set forth in the law.

  • the right to be informed about what personal information we have about you and how we process your Personal Data;
  • the right to access your Personal Data as processed by us and, if you believe that any information relating to you is incorrect, obsolete or incomplete, to request its correction or updating;
  • the right to request the erasure of your Personal Data or the restriction thereof to specific categories of processing;
  • the right to withdraw your consent at any time, without affecting the lawfulness of the processing before such withdrawal;
  • the right to object, in whole or in part, to the processing of your Personal Data. With certain exceptions, this includes the right to object to direct marketing and the right to object to your Personal Data being used for research;
  • the right to request a data portability, i.e. that the Personal Data you have provided to us be returned to you or transferred to the person of your choice, in a structured, commonly used and machine-readable format without hindrance from us and subject to your confidentiality obligations; and
  • the right to object to automated decision making including profiling resulting in a significant or legal effect, i.e. you can request an human intervention in any automated decision making process related to processing of your data resulting in a significant or legal effect, and where such processing is not based on your consent, authorised by law or necessary for the performance of a contract. However, we don’t currently make decisions using automated processes only that result in significant or legal effects on individual.

If you have a question or want to exercise the above rights, you may send an email to our data protection officer at or a letter to Novartis Gene Therapies at their address provided below with a scan of your identity card for identification purpose, it being understood that we shall only use such data to verify your identity and shall not retain the scan after completion of the verification. When sending us such a scan, you should make sure to redact your picture and national registry number or equivalent on the scan.

If you are not satisfied with how we process your personal information, you may address your request to our data protection officer at, who will investigate your concern.

6. How frequently we update this policy?

We keep our Privacy Policy under regular review and update it as and when required. The last version of the policy was last updated on October 20, 2021.

7. Privacy at Novartis

The responsible use of personal data is a core value at Novartis.

Novartis Group fully respects privacy laws and is subject to an internal framework of privacy rules and policies.

The internal transfer of data is governed by Binding Corporate Rules, so called “BCR”. BCR are a system of privacy principles, rules and tools intended to ensure the protection of personal data. This collection of rules represents today’s best practice to meet the European Economic Area’s (“EEA”) data protection requirements for the transfer of personal data within a Group of companies. To be legally effective, the BCR have been approved by EEA Data Protection Agencies. BCR regulate the mechanism of transfer of data inside the Novartis Group of companies.

8. Contact us

If you wish to contact us regarding how we use your personal data or you wish to exercise your data privacy rights, please email us at or write us to the following address:

Novartis Gene Therapies EU Limited
Block B The Crescent Building
Northwood, Santry Dublin 9
Republic of Ireland
Tel.: +353 (0) 1 893 4141

In order to facilitate the most efficient answer, please provide the following information:

  • Name of the website you are referring to
  • Your relationship and interaction with us
  • The description of the information you would like to receive from us