PACS1 Syndrome Research Foundation
The Foundation funds scientific research to accelerate treatments for PACS1 Syndrome, a rare neurodevelopmental disorder characterized by intellectual and developmental delay, epilepsy, and language impairment affecting approximately 250 children worldwide. The PACS1 Syndrome Foundation prioritizes research projects and initiatives that are most likely to help advance the approval of novel treatments and expedite clinical trials.The Foundation was founded in August 2017 and is a registered 501c3 not for profit organization.
If you have questions about this Privacy Notice, you may contact the Foundation at:
President, PACS1 Syndrome Research Foundation
P.O. Box 776
Old Greenwich, CT 06870
1. The Personal Data That The Foundation May Collect About You
A. Personal Information
B. Personal Information That You Provide To Us
Contact information: When you contact the Foundation, either by email at firstname.lastname@example.org or through our contact form on the Foundation’s website, the Foundation may collect:
Your contact information, such as name, email address, mailing address, and telephone number; and
Any other information that you share with us.
Warrior Stories Form: If you choose to share information about you and individuals in your family affected by PACS1 Syndrome via the Foundation’s Warriors Stories Form, the Foundation will collect some or all of the following information:
Your contact information, such as name, email address, mailing address, and telephone number;
The patient’s name;
The patient’s age and birth date;
The patient’s photos;
Medical and health-related information about the patient; and
Other information you choose to share about yourself and/or the patient.
The Foundation may retain copies of your correspondence and the information you provide for record-keeping purposes.
C. Data Collected Automatically Via Cookies Or Other Technologies
About Cookies Generally
A cookie is a small text file (a string of letters and numbers) that a website saves on your computer or mobile device when you visit the website. Cookies are then sent back to the originating website on each subsequent visit, or to another website that recognizes that cookie, to develop a record of the user’s online activity. Cookies may be either “persistent” cookies or “session” cookies: a persistent cookie will be stored by a web browser and will remain valid until its set expiry date, unless deleted by the user before the expiry date; a session cookie, on the other hand, will expire at the end of the user session, when the web browser is closed. Cookies do not typically contain any information that personally identifies a user, but personal information that we store about you may be linked to the information stored in and obtained from cookies.
Cookies Used On The Foundation’s Website
The Foundation’s website is hosted by Wix, which, in turn, places the following cookies on the Foundation’s website:
Most browsers allow you to refuse to accept cookies and to delete cookies. The methods for doing so vary from browser to browser, and from version to version. You can, however, obtain up-to-date information about blocking and deleting cookies via these links: (a) https://support.google.com/chrome/answer/95647 (Chrome); (b) https://support.mozilla.org/en-US/kb/enhanced-tracking-protectionfirefox-desktop (Firefox); (c) https://help.opera.com/en/latest/security-and-privacy/ (Opera); (d) https://support.microsoft.com/en-gb/help/17442/windows-internetexplorer-delete-manage-cookies (Internet Explorer); (e) https://support.apple.com/en-gb/guide/safari/manage-cookies-andwebsite-data-sfri11471/mac (Safari); and (f) https://support.microsoft.com/en-gb/help/4468242/microsoft-edgebrowsing-data-and-privacy (Edge).
The Foundation’s Use Of Personal Information
Information sharing: The Foundation may process Personal Information to provide information requested by you, including:
To supply news and information regarding the Foundation and PACS1 Syndrome research; and
To respond to your questions, comments or requests sent to us via email or postal mail.
Warriors Stories: With your consent, we may share the Personal Information that you provide on the Warriors Stories Form on the Foundation’s website and our social media accounts.
Scientific research: With your consent, we may utilize the Personal Information that you provide for scientific research on PACS1 Syndrome.
Administrative purposes: The Foundation may process your Personal Information for administrative purposes, including for the purposes of:
Operating our website;
Maintaining security and preventing fraud and other criminal activity;
Obtaining or maintaining insurance coverage, managing risks, and/or obtaining professional advice, when necessary; and
Complying with a legal obligation to which we are subject or in order to protect your vital interests or the vital interests of another natural person.
Other purposes: The Foundation may also process your Personal Information to engage in any other purposes disclosed to you at the time we collect the information or pursuant to your consent.
2. Sharing Your Personal Information With Others
When using your Personal Information for the purposes and on the legal bases described above, the Foundation may share your Personal Data with the following:
Any sub-contractors, agents, consultants, advisers or service providers of the Foundation where disclosure is necessary to fulfill the purposes set forth above in Section II;
Third parties with whom the Foundation engages for its own fundraising initiatives (note that the Foundation does not share your Personal Information with third parties for their own fundraising or marketing purposes); and[KS4]
Law enforcement agencies, regulators, or other governmental or supervisory bodies in order to comply with any valid legal process such as a search warrant, subpoena, statute or court order, and to counter any attempted breach of security of our website or a physical threat to you or others.
Sometimes we anonymize, aggregate, or de-identify information so that it can no longer identify you, as defined under applicable laws. For example, we de-identify data collected on the Data Hub before it is sent to third-party researchers. We can use and disclose this aggregated or de-identified information for any purpose unless an applicable law says otherwise.
Please note that the Foundation does not sell your Personal Information or otherwise transfer your personal data to third parties who wish to use it for their own marketing promotions or other purposes.
3. Our Legal Basis For Processing Your Personal Information
In some jurisdictions, like the European Union and the European Economic Area, we only collect, use, or share information about you when we have a valid reason. This is called a “lawful basis.” Specifically, this is one of the following:
The consent you provide to us at the point of collection of your information;
The performance of the contract we have with you;
The compliance of a legal obligation to which we are subject, or
The legitimate interests of The Foundation or a third party. “Legitimate interest” is a technical term under international laws, including the European Union General Data Protection Regulation. It means that there are good reasons for the processing of your personal information and that we take measures to minimize the impact on your privacy rights and interests. “Legitimate interest” also refers to our use of your data in ways you would reasonably expect and that have a minimal privacy impact.
We have a legitimate interest in gathering and processing personal information, for example: (1) to support the community of patients with PACS1 Syndrome and their families through, e.g., information sharing and fundraising opportunities; (2) to facilitate the scientific research of PACS1 Syndrome; and (3) to ensure that our networks and information are secure.
4. Your Rights And Choices With Respect To Your Personal Information
A. In General
You may make the following requests by email at email@example.com.
Communications from the Foundation: You may request to unsubscribe from emails we send regarding the Foundation and PACS1 Syndrome research. However, please note that the Foundation has the right to retain all contact information you provided.
Warriors Stories: You may request that we remove posts on our website or on social media platforms that contain information and data you provided via the Warriors Stories Form. However, please note that the Foundation has the right to retain all information you provided via the Warriors Stories Form.
B. The Right To Access, Correct, Change/Update, Delete, Or Restrict Processing Of Your Personal Information
In some jurisdictions ( the European Union or the United Kingdom) you may exercise the following choices:
(a) The right to access - you can ask for copies of your personal data;
(b) The right to rectification - you can ask us to rectify inaccurate personal data and to complete incomplete personal data;
(c) The right to erasure - you can ask us to erase your personal data;
(d) The right to restrict processing - you can ask us to restrict the processing of your personal data;
(e) The right to object to processing - you can object to the processing of your personal data;
(f) The right to data portability - you can ask that we transfer your personal data to another organization or to you;
(g) The right to complain to a supervisory authority - you can complain about our processing of your personal data; and
(h) The right to withdraw consent - to the extent that the legal basis of our processing of your personal data is consent, you can withdraw that consent.
You may exercise any of your rights in relation to your personal data by contacting us at firstname.lastname@example.org.
These rights are subject to certain limitations and exceptions. You can learn more about the rights of data subjects by visiting [https://edpb.europa.eu/our-work-tools/general-guidance/gdpr-guidelinesrecommendations-best-practices_en and https://ico.org.uk/fororganisations/guide-to-data-protection/guide-to-the-general-data-protectionregulation-gdpr/individual-rights/].
5. Links to Other Websites
The Foundation’s website may contain links to third-party websites for your convenience or reference. We are not responsible for the privacy practices or content of those websites. We recommend reviewing the privacy policies of those websites before providing any personal information to them.
6. Confidentiality and Security
The Foundation endeavors to maintain the confidentiality of your Personal Information in all our activities and programs. We make reasonable efforts to protect the privacy and security of all Personal Information. We have implemented reasonable technical and organizational security measures designed to protect the security of any Personal Information we process. However, despite our safeguards and efforts to secure your information, no electronic transmission over the Internet or information storage technology can be guaranteed to be secure, so we cannot promise or guarantee that hackers, cybercriminals, or other unauthorized third parties will not be able to defeat our security and improperly collect, access, steal, or modify your Personal Information. Although we will endeavor to protect your Personal Information, the transmission of Personal Information to and from the Foundation is at your own risk.
7. Children And Personal Information
The Foundation’s website is not intended for children under the age of 18, and we do not knowingly collect personal information from anyone under the age of 18 except with the consent of his/her parent or guardian.
8. Transferring Personal Data Internationally
The Foundation is located in the United States, and information the Foundation collects from you will be processed in the United States. The Foundation collects and transfers Personal Information to the United States only in the following circumstances: with the data subject’s consent; to perform a contract we have with a third party that is in the data subject’s interest; to establish, exercise or defend legal claims; or to fulfill a compelling legitimate interest of the Foundation in a manner that does not outweigh the data subject’s rights and freedoms.
9. Data Retention
The Foundation will retain your Personal Information for as long as necessary to fulfill the purposes for which it was collected and processed and for the purposes of satisfying any legal, regulatory, accounting or reporting requirements. Furthermore, you acknowledge that Personal Information that you submit via the Warriors Stories Form for publication on our website or on social media may be available, via the internet, around the world. We cannot control the retention, or prevent the use (or misuse), of such Personal Information by others.
10. Updates To This Policy
The Foundation reserves the right to update or modify this Policy at any time without prior notice. Any changes will be effective immediately upon posting of the updated policy on our website. Your continued use of our website after such changes constitutes your acceptance of the revised policy.
11. Website Usage And Consent
Effective Date: January 20, 2024