Last updated on July 12, 2023

Neogene Therapeutics, Inc. and Neogene Therapeutics, B.V., (”Neogene,” “our,” “we” or “us”) respects your privacy and we want you to be familiar with how we collect, use, share, or otherwise process, your Personal Information. This Privacy Notice is meant to help you understand our privacy practices related to the Personal Information we collect from you or that you share with us when you visit and interact with us online, such as through our websites (“Website” or “Websites”) or e-mail and when you participate in our clinical programs, apply for employment, or have other business interactions with us (“Services”) where we display or reference this Privacy Notice.

Information We May Collect

We may combine the Personal Information we collect about you online with the Personal Information we collect about you from our offline interactions with you (for example, our interactions by telephone or in person). We may also combine any of the information we collect about you with information we lawfully obtain from other sources, such as public records or websites, or other third parties (e.g., health care professionals, patient groups, government agencies). If required, we will collect your consent, or provide an opportunity for you to opt-out of this type of processing.

Sensitive Personal Information

In the course of offering our Services, and with your explicit / express consent or applicable legal basis, where required and permitted under applicable laws, we may also collect and process Personal Information that is of a sensitive nature, including, for example the following categories of Sensitive Personal Information:

Cookies, Web Server Data, & Other Technologies

We use cookies and similar technologies (such as web beacons, tags, scripts and device identifiers) to collect and store analytics and other information when you use our Website. The cookies we use include both first-party and third-party cookies. Cookies, or similar technologies, may provide us the following information:

Cookies may be placed on your computer by us and by third parties with whom we have a relationship, such as web analytic services and advertising network services.  These cookies can help us to share content from our social media sites, gain helpful insights about how our Websites and Services are used and how we can improve your experiences and interactions during your use of our Websites and Services.

You can read more about the cookies we use or change your preferences via our Cookie Policy. You can also click the link “Do Not Sell/Share My Personal Information” on our website to opt-out of sharing your information with third parties or cookie providers who may use your Personal Information for their own purposes. 

How We Use Your Information

We may use the Personal Information we collect for a variety of purposes including: 

We will only process Sensitive Personal Information when we have your express consent, or another legal basis. Please contact us at to make a request to restrict the processing of processing of your Sensitive Personal Information, or you may make this request by clicking the link “Limit The Use and Disclosure of My Sensitive Personal Information” on our Websites.

Information We Share With Third Parties

We may disclose your Personal Information to third parties for various business purposes as described in this Privacy Notice or under specific circumstances, including:

We may also disclose your Personal Information to Service Providers, third-party companies, suppliers and/or individuals with which we have contracted to provide services, for purposes such as:

When we share Personal Information with third-party service providers, we require that they use your information only for the purposes we’ve authorized, and for the limited reasons explained in this Privacy Notice. We also enter into agreements with these service providers to require them to protect your Personal Information appropriately.

Retaining Your Information

We will retain your Personal Information for the time-period required or allowed by applicable law.  Otherwise, we keep your Personal Information for as long as reasonably necessary to serve the purpose(s) for which it was collected.

International Transfers of Information

Your Personal Information may be stored and processed in any country where we have facilities or in which we engage Service Providers. We will only permit the transfer your Personal Information when we are legally permitted to do so, for example, when we have established a legal basis such as:

You should not use this Website if you do not want your Personal Information potentially transferred to, or otherwise processed in countries outside of your country of residence.  Some countries to which your Personal Information may be transferred may have less-protective data protection laws than those of your country. In some limited cases, courts, law enforcement agencies, regulatory agencies or security authorities in those other countries may be entitled to access your Personal Information.

If you are located in the EEA, your Personal Information may be transferred to our affiliates or service providers in non-EEA countries that are recognized by the European Commission as providing an adequate level of data protection according to EEA standards. For transfers from the EEA to countries not considered adequate by the European Commission, we have put in place adequate measures to protect your Personal Information, such as standard contractual clauses adopted by the European Commission.

Exercising Your Rights

We respect your rights to inquire about the Personal Information we have collected, used or disclosed. 

Under certain laws, you may have the right to request access to, export, rectification or deletion of, your Personal Information, as well as the right to object to the processing of your Personal Information. These rights may only apply under certain circumstances. In some cases, we may be unable (e.g., due to legal requirements) or not obligated to satisfy your request. To protect your privacy and security, we may require you to provide us with information to verify your identity before we are able to comply with your request. In that case, we will only process any additional information you provide for the purpose of confirming your identity. We will respond to your request in accordance with applicable law, and if we are unable to comply with your request, we will provide you with an explanation. We will not discriminate against you for exercising your rights, however, we may not be able to provide you with Services and your use of our Website(s) may be limited if we are unable to use your Personal Information.

You may contact our Data Protection Officer  at to exercise your rights related to Personal Information we have collected about you, or to update or correct Personal Information that you have provided to us. You can also make a request to opt out of processing of your Sensitive Personal Information by clicking the link “Limit the Use Of My Sensitive Personal Information” on our website(s).

In addition, and if you have any unresolved concerns, you have the right to lodge a complaint with the competent data protection authority if one is available in your country or US state.  EEA data protection authority contact information can be found here.

How We Safeguard Your Information

Although we cannot guarantee the security of activities, transmissions or communications conducted via the Internet, Neogene has implemented reasonable physical, technical, and administrative security measures to protect Personal Information collected and used as described in this Privacy Notice.

Children’s Privacy

We care about protecting children’s privacy.  In some instances, we may collect Personal Information about children with the consent of a parent or guardian for purposes of conducting clinical activities or providing related clinical programs. We do not otherwise intentionally collect Personal Information from, or market to, children.

Our Website(s), however, are not intended for children, and we encourage all parents and guardians to monitor their children’s use of the Internet. If you are a parent or guardian and think that we have collected Personal Information from a child, please contact us as described in the How To Contact Us section of this Privacy Notice.

Changes To This Privacy Notice

Neogene may update or make changes to this Privacy Notice from time to time, at our discretion. We encourage you to visit this page periodically and to review our most current Privacy Notice and applicable effective date.

How To Contact Us

If you have questions or comments about this Privacy Notice or wish to submit a request to exercise your rights related to the Personal Information we have collected about you, you may contact us at or 1-800-238-6791.