Privacy Policy

Legal Disclaimer

The information on this website is provided for informational purposes only. It does not constitute medical advice, and should not be used in place of consultation with appropriate medical professionals. You should not rely on this website in deciding on a treatment plan, drug usage or any other medical decisions. Consult a qualified medical professional about your health, including diagnosis, prognosis, and treatment for any condition.


Diversity, Equity, and Inclusion

Project 8p does not exclude, deny benefits to, or otherwise discriminate against any person on the basis of race, color, religion, national origin, disability, age, or sexuality in admission to, participation in, or receipt of the services and benefits under any of its programs and activities, whether carried out by Project 8p directly or through a contractor or any other entity with which Project 8p arranges to carry out its programs and activities.  We respect and value diverse life challenges, creating an environment that is inclusive of all.


Legal & Privacy Policy


This online privacy policy (“Policy”) applies to all Project 8p (“Foundation,” “we,” or “us”) websites, mobile applications, and online resources or digital services (collectively, the “Sites”) that link to this Policy. Project 8p is aware of our users’ concerns about their privacy when visiting our site and online resources. This notice explains what information we collect about users, how we collect that information, for what purposes we use the information, to whom we may disclose the information, and how users can limit our use of their information. Please be sure to read this entire Privacy Policy before using the Sites. BY USING THE SITES, YOU AGREE TO BE BOUND BY THE TERMS OF THIS POLICY.

From time to time we may make changes to this Policy to reflect changes in our legal obligations or the ways in which we process your Personal Data.  When changes are made, we will post the updated Policy here with the effective date of its revision.  We suggest routinely visiting this page to ensure you have reviewed the current Policy.


1. Contact and Policy Updates

You may contact Project 8p at or 600 Third Avenue, 42nd Floor, New York, New York 10016.

We reserve the right to change or update this Privacy Policy at any time.  When changes are made, we will post the updated policy and the date of the revision, so please re-visit this page occasionally to check for updates.  By continuing to use the websites after the posting of such changes, you accept the policy as modified.

2. What Information Do We Collect and For What Purposes?

Our Sites may collect Personal Data, which is information that either directly identifies you or could reasonably be used in combination with other information to identify you. Examples of Personal Data that directly identify you include your name, contact information, email address, and other information in combination with such identifiers.  Our websites may also collect Personal Data that does not directly identify you by name or contact information but which may be used to identify that a specific computer or device has accessed our website and could be used to identify you if combined with certain other information.

Personal Data that we may collect includes:

Contact Information- We collect this information in order to be able to communicate with you. This information may include your name, mailing address, telephone number, email address, job title, age, and other information you provide on our website. It is your choice as to whether to provide your Personal Data.

Interests and Preferences- This information helps us understand your interest in our products and services so that we can best serve you. This information may include contact and product preferences, languages, marketing preferences and demographic data.

  • Certain areas of our Sites allow you to submit your Personal Data to us. For example, you may subscribe to a Project 8p mailing list or newsletter, or register for an event. We may use the information you provide to send you requested information, respond to your inquiry, improve our websites, verify your relationship with Project 8p, and take other actions that may be necessary to respond to your request.

Interaction History- This information helps us fulfil services you have requested and to understand your interests and preferences. This includes how you interact with us and use our websites, your correspondence with us, and any purchase history or customer account information. Where you have purchased a product or service from us, we use this information in order to perform our agreement with you. This information is collected automatically, for our legitimate business interests.

Automatically Collected Information-  Our Sites also collect other basic information about you which does not directly identify you but which may correspond with you or a particular device. We use this information to learn more about how our websites and online resources are used and to otherwise improve and administer the site. We may collect Personal Data on your visit to our websites through cookies, IP information, or other data provided by your web browser or device, including IP Address, geographic location, resources you have accessed, and similar information. Further information concerning automatic information collection on our Sites can be found below, in the section titled. How Does This Site Use Cookies and Other Tracking Technologies. We collect this information automatically for our legitimate business interests.

Where permitted by law, we may combine Personal Data you provide with other information you have provided to Project 8p through our Sites. Where permitted by law, we may also combine Personal Data collected through our websites and online resources with Project 8p’s offline records and information provided to us by third parties. We use this consolidated information to improve our website and online resources, enhance our marketing activities, better design our offerings, and facilitate other business functions.

3. What is Our Legal Basis for the Collection of Personal Data?

We process your information for the specific purposes listed above pursuant to a legal basis, including the following:

  • Compliance with applicable laws or performance of a contract:  In specific circumstances, we may need to process your information to comply with a relevant law/regulation or to fulfill our obligations under a contract to which you are subject.  Where we process your information to meet our legal obligations, you will likely not be permitted to object to this processing activity, but you will usually have the right to access or review this information unless it would impede our legal obligations.  Where we are processing to fulfill our contract obligations under a contract where you are a party, you might not be able to object to this processing, or if you do choose to opt-out or object to our processing, it may impact our ability to perform a contractual obligation that you are owed.
  • Our legitimate interest:  We may process your information based on our legitimate interests in communicating with you and managing our interactions with you regarding our products, services, and education opportunities.  In addition to the other rights you may have described below, you have the right to object to such processing of your information.   You can register your objection by contacting us as described above.
  • Your consent:  In some cases, at the point at which you provide information, we may ask you for your consent to collect and process your information.  If you choose to provide us with your consent, you may later withdraw your consent (or opt-out) by contacting us as described in the “how do you contact us” section below.  Please note that if you withdraw your consent it will not affect any processing of your information that has already occurred.  Where we process your information based on consent, we will provide more detailed information to you at the time when we obtain your consent.

4. How Does This Site Use Cookies and Other Tracking Technologies?

Cookies- Our websites may use a tracking technology called a “cookie.” A cookie is a small data file that a website can place on your computer’s hard drive, where your internet browser files are kept. Cookies enable us to recognize when a computer being used to browse our websites has previously visited a Project 8p website or online resource. Cookies can also be used to enable a site to “remember” the information a visitor has previously inputted. Cookies may be placed on your computer both by us and by third parties with whom we have a relationship, such as web analytic services and advertising network services.

Web Beacons. On certain web pages or in emails we send to you, we may utilize a technology called a “web beacon” (also known as an “action tag” or “clear GIF technology”). We may use web beacons to help determine which email messages sent by us were opened and whether a message was acted upon. Web beacons also help analyze the effectiveness of websites by measuring the number of visitors to a site or how many visitors clicked on key elements of a site.

Social Plugins- This site may use social plugins (e.g., the Facebook “Like” button) to enable you to easily share information with others. When you visit our Sites, the operator of the social plugin may be able to place a cookie on your computer, enabling that operator to recognize individuals who have previously visited our Sites. If you have previously logged into the associated social media website (e.g., Facebook) before browsing on our website, the social plugin allows that social media website to receive information about your visit to particular pages on our website. The social plugin may collect this information for any such visitors who have logged into social networks, whether or not they specifically interact with the plugin on our websites (e.g., by clicking “Like” or “Share”). The social plugin may also allow the social media website to share information about your activities on our Sites with other users of their social media website. For further details about the information shared via a particular social media plugin, you should refer to that social media site’s privacy statement.

Google Analytics- Google Analytics may be used to help make our Sites work better and to help us understand what parts of the Sites are being utilized. Google Analytics uses technical tools such as, first-party cookies and JavaScript code, to collect information about visitors. Google Analytics service tracks visitors to the site who have JavaScript enabled. Google Analytics anonymously tracks how visitors interact with a website, including where they came from and what they did on a site. Google Analytics collects the information set forth above from users. This information is used to administer and update the website, and we will also assess whether the visitors to the site match the expected site demographics and determine how key audiences are navigating the content.

 As mentioned above, we use cookies and other tracking technologies for a number of purposes. For example, we may use cookies to “remember” information you have entered on our site, like your email login to your Project 8p account. We may use cookies to track user traffic patterns. We do this in order to determine the usefulness of the information we supply to you and other users and to see how effective our navigational structure is in helping users reach that information.

How does our site respond to web browser “Do Not Track” signals?

Certain web browsers and other programs may be used to signal your preferences to Project 8p about how or whether Project 8p or third parties may collect information about your online activities. Currently, our Sites do not respond to such signals.

What choices do you have about cookies?

The European Interactive Digital Advertising Alliance maintains a website where consumers can opt out from receiving interest-based advertising from some or all of the network advertising companies participating in the program (

Google analytics offers an opt-out provision for website visitors who do not want their data to be collected. You can receive more information about this option here:

Google and its wholly owned subsidiaries may retain and use, subject to the terms of its Privacy Policy (located at, or such other URL as Google may provide from time to time), information collected in your use of the Google Analytics Information Disclosures and Sharing.

In addition, most internet browsers allow you to change your browser settings to notify you when you receive a cookie, which lets you choose whether or not to accept it, or to automatically refuse all cookies. Please be aware that some functionality on some of our websites and online resources relies on the use of cookies and may not be available should you choose to refuse all cookies.

5. Does Project 8p Disclose Your Personal Data to Third Parties?

We may disclose your Personal Data to third parties who provide us with various business services, including monitoring and maintaining our websites, preparing newsletters and mailings, and meeting planning. We may also share your Personal Data with our affiliates, in compliance with applicable laws.

Project 8p also uses Personal Data to assist in providing information about clinical studies, providing aggregate disease statistics to third parties, and contributing data to third party journal publications.

In addition, we may disclose your Personal Data to third parties in special cases, including when we have a reason to believe that such disclosure is necessary to identify, contact, or bring a legal action against someone who may be causing injury to or interference with our rights and property or those of any other person. We may also disclose your Personal Data when we believe the law requires it and in any situation that involves threats to any person’s physical safety.

If all or part of Project 8p is merged into another entity, the information we have about you may be transferred to a third party as part of that transaction. The acquiring entity will be required to use the Personal Data that is transferred only in a manner that is consistent with this notice.

6. Will Project 8p Transfer Your Personal Data Internationally?

Our websites and online resources are owned and operated in the United States, but the information you provide may be accessible by our affiliates and vendors in other countries. If you are visiting this site from a country other than the United States, your Personal Data will cross an international boundary.

The level of protection for your Personal Data in the United States may not be the same as the level of protection in your country. By using this site, you consent to the collection, storage, and processing of your Personal Data in the United States.

7. Is this Website Intended for Children?

Our websites and online resources are not intended for children. We do not knowingly collect any Personal Data from children under 16-years old. However, if the parent or the guardian of a child under 16 years old believes that the child has provided us with Personal Data, the parent or guardian of that child should contact us below to request the information’s deletion. Anyone under 16 years old should seek their parent’s or guardian’s permission prior to using or disclosing any Personal Data to Project 8p.

8. What Are Your Rights With Respect to Your Personal Data?

You have the right to the following information regarding Project 8p’s processing of your Personal Data:

  • the purposes of the processing.
  • the categories of Personal Data concerned.
  • the recipients or categories of recipient to whom the Personal Data have been or will be disclosed.
  • where possible, the envisaged period for which the Personal Data will be stored, or, if not possible, the criteria used to determine that period.

This notice is intended to provide all of this information. Any questions about these details may be directed to

California Civil Code Section 1798.83 permits California residents to request certain information regarding our disclosure of personal information to third parties for their direct marketing purposes. To make such a request, please write to the email address provided above. Be sure to include your name and contact information and we will respond within the time required by law.

You also have the following rights with respect to your Personal Data:

  • The right to request access to the Personal Data that Project 8p has about you, as well as the right to request rectification of any data that is inaccurate or incomplete.
  • The right to request a copy of your Personal Data in electronic format so that you can transmit the data to third parties, or to request that Project 8p directly transfer your Personal Data to one or more third parties.
  • The right to object to the processing of your Personal Data for marketing and other purposes.
  • The right to erasure of your Personal Data when it is no longer needed for the purposes for which you provided it, as well as the right to restriction of processing of your Personal Data to certain limited purposes where erasure is not possible.
  • The right to lodge a complaint with the supervisory authority where you believe that your rights have been violated.

To exercise any of these rights, please contact us at

9. What Automated Decisions are Made Using Your Personal Data?

We do not use your Personal Data to make any automated decisions.

10. How Secure Is the Personal Data You Provide?

Project 8p takes certain steps to protect your Personal Data from unauthorized access. However, no internet transmission is ever completely secure or error free. In particular, email sent using this website or another online resource may not be secure. You should take special care before deciding to send us information via email.

11. For How Long Does Project 8p Retain Your Personal Data?

All data collected through this website is retained for the duration of your relationship with our organization.

12. Where Links Are Provided on this Website, Does this Notice Apply to the Linked Sites?

This Notice only applies to Project 8p websites that link to this Notice. Our websites also may contain links to third-party websites. We do not endorse and are not responsible for the content of third-party websites or resources, and our privacy notice does not apply to any sites that are not affiliated with Project 8p, even if you access them via a link on our site. You should review the privacy policies of any third-party site before providing any information.

Social Media- Project 8p uses social media platforms including Facebook, Twitter, and Instagram to engage followers and non-followers in dialogue. Project 8p may make use of any information/data collected on these public platforms. Project 8p abides by the terms and conditions of the social platforms and reserve the right to use those networks for fundraising purposes. Comments made on Project8p’s social media accounts are reviewed and made public at our discretion, and through the use of these functions, you accept that Project 8p is permitted to edit, moderate, and reuse comments made on our PUBLIC PAGES ONLY for in-house promotional materials. Promotions and advertising by others not approved by Project 8p are not permitted on Project 8p’s social pages nor is derogatory or hateful speech.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.