CSNK2A1 Foundation Terms of Use

1. About the CSNK2A1 Foundation

The CSNK2A1 Foundation is a nonprofit organization dedicated to advancing understanding of Okur-Chung Neurodevelopmental Syndrome (OCNDS), accelerating research and treatments, supporting individuals and families affected by OCNDS, and providing educational and community resources.

The information and resources on this website are provided in furtherance of those charitable and educational purposes.

2. Educational and Informational Purposes Only

Information on this website is provided for general educational and informational purposes.

The Foundation seeks to provide accurate and useful information, but medical and scientific knowledge changes over time, and information on the website may not always reflect the most recent research, clinical guidance, or individual circumstances.

The Foundation does not guarantee that all information on the website is complete, current, or appropriate for every individual.

3. No Medical Advice

Information provided by the CSNK2A1 Foundation is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

The Foundation does not provide medical advice or establish a healthcare provider-patient relationship through this website.

Always seek the advice of a qualified healthcare professional regarding medical questions, symptoms, diagnoses, medications, treatment decisions, or changes in care.

Do not disregard professional medical advice or delay seeking medical care because of information you have read on this website.

If you believe you or another person may be experiencing a medical emergency, contact the appropriate emergency services in your location.

4. Research and Scientific Information

The Foundation provides information about OCNDS research, scientific publications, research programs, registries, natural history studies, sample collection, research opportunities, and other scientific activities.

This information is provided for educational purposes and to help individuals and families learn about opportunities that may be relevant to the OCNDS community.

Information about a research study or opportunity on the Foundation’s website does not guarantee:

• eligibility for a study;
• acceptance or enrollment in a study;
• access to a particular treatment;
• any medical benefit;
• any particular research result; or
• that a study or opportunity will remain available.

Participation in research is governed by the applicable research protocol, eligibility criteria, informed consent or authorization, Institutional Review Board requirements, and other applicable research documents and laws.

5. Personal Stories and Community Experiences

The Foundation may share family stories, caregiver experiences, interviews, testimonials, podcasts, videos, and other community perspectives.

These materials reflect the experiences and views of the individuals involved.

Individual experiences with OCNDS may differ substantially.

Personal stories, testimonials, or community discussions should not be interpreted as medical advice, a prediction about another person’s experience, or a recommendation regarding medical care or treatment.

6. OCNDS Contact Registry and Community Programs

The Foundation operates an OCNDS Contact Registry and other programs for individuals and families affected by OCNDS.

Submitting information to the Contact Registry does not enroll an individual in a research study and does not constitute consent for identifiable Contact Registry information to be used for research.

Information provided through the Contact Registry and other community programs is handled in accordance with the Foundation’s Community Privacy Notice.

Participation in certain Foundation programs may be subject to additional terms, consent forms, releases, permissions, research documents, or program-specific requirements.

7. Private Community Spaces

The Foundation may operate or facilitate private community spaces, including closed social-media groups or other forums intended for individuals and families affected by OCNDS.

The Foundation may verify eligibility before granting access to these spaces.

Although access may be restricted, the Foundation cannot guarantee the confidentiality of information voluntarily shared with other members of a private group or community.

Users should use their own judgment when sharing personal, medical, financial, or other sensitive information.

Private groups hosted by third-party services, such as Facebook, are also subject to the terms, policies, and privacy practices of those services.

8. Third-Party Websites and Resources

The Foundation’s website may link to websites, studies, hospitals, universities, researchers, registries, advocacy organizations, donation platforms, social-media services, or other third parties.

These links are provided for convenience, education, or informational purposes.

Unless expressly stated otherwise, a link does not mean that the Foundation:

• owns or controls the third-party site;
• endorses every statement, service, product, or activity offered by the third party;
• guarantees the accuracy or availability of the third-party content; or
• assumes responsibility for the third party’s privacy, security, or other practices.

Your interactions with third parties are subject to their own terms, privacy policies, research consent documents, and other applicable requirements.

9. Intellectual Property

Unless otherwise indicated, the content on this website is owned by, licensed to, or used with permission by the CSNK2A1 Foundation.

This content may include:

• text;
• graphics;
• educational materials;
• research summaries;
• photographs;
• videos;
• podcasts;
• illustrations;
• downloadable resources;
• website design;
• logos;
• trademarks; and
• other Foundation materials.

You may access and use website content for personal, educational, and other noncommercial purposes consistent with the Foundation’s mission, provided that you do not remove copyright, trademark, attribution, or other proprietary notices.

You may not reproduce, modify, distribute, sell, commercially exploit, or create derivative works from Foundation content without permission where permission is required.

Nothing in these Terms transfers ownership of Foundation intellectual property to a website user.

10. Foundation Name and Logo

The CSNK2A1 Foundation’s name, logo, marks, and other brand assets may not be used in a manner that falsely suggests Foundation sponsorship, endorsement, partnership, or approval.

Use of the Foundation’s logo and brand assets is also governed by the Foundation’s separate Logo Use Policy.

11. Family-Submitted Content

From time to time, individuals or families may voluntarily provide photographs, stories, videos, quotes, testimonials, or other content to the Foundation.

The Foundation’s right to use that content will be governed by any applicable permission, release, submission form, or other agreement associated with that content.

These Terms of Use do not grant the Foundation broader rights to family-submitted content than those provided in the applicable permission or agreement.

12. Acceptable Use of the Website

You agree not to use the website in a manner that:

• violates applicable law;
• interferes with or disrupts the operation or security of the website;
• attempts to gain unauthorized access to Foundation systems, accounts, data, or networks;
• introduces malware, malicious code, or other harmful technology;
• impersonates another person or misrepresents your affiliation with the Foundation;
• infringes the rights of the Foundation or another person;
• collects information about other users without authorization; or
• uses Foundation content or systems for fraudulent, deceptive, unlawful, or harmful purposes.

The Foundation may restrict or block access when reasonably necessary to protect the website, the Foundation, or others.

13. Donations, Purchases, and Event Registrations

The website may allow users to make donations, purchase items, register for events, participate in fundraising activities, or access services provided through third-party platforms.

Additional terms may apply to those transactions or services.

Payment information may be processed by third-party payment processors rather than directly by the Foundation.

Donations are subject to applicable law and Foundation policies.

Unless otherwise stated, donations are generally nonrefundable.

Event registrations, merchandise purchases, fundraising activities, or other transactions may have separate cancellation, refund, or participation terms.

14. Privacy

Use of the website is also subject to the Foundation’s Website Privacy Policy.

If you provide personal, family, diagnosis, genetic, health-related, or other information through the OCNDS Contact Registry or another Foundation community program, please also review the Foundation’s Community Privacy Notice.

If you participate in a research study, additional privacy, consent, authorization, or research-specific requirements may apply.

15. Website Availability and Changes

The Foundation may update, modify, remove, suspend, or discontinue website content or features at any time.

We do not guarantee that:

• the website will always be available;
• access will be uninterrupted;
• content will be error-free;
• every link will remain active; or
• every resource, study, program, or opportunity described on the website will remain available.

16. Disclaimer of Warranties

To the extent permitted by applicable law, the website and its content are provided on an “as is” and “as available” basis.

The Foundation does not make warranties regarding the accuracy, completeness, reliability, availability, or suitability of website content for any particular purpose.

Nothing in this section limits any rights that cannot lawfully be waived or limited.

17. Limitation of Liability

To the extent permitted by applicable law, the CSNK2A1 Foundation and its directors, officers, employees, volunteers, contractors, and representatives will not be liable for indirect, incidental, consequential, special, or similar damages arising from or related to use of, inability to use, or reliance on the website or its content.

The Foundation is not responsible for damages arising from third-party websites, services, research programs, or other resources accessed through links on the website.

Nothing in these Terms excludes or limits liability where such exclusion or limitation is prohibited by law.

18. No Professional Relationship

Use of the website, contacting the Foundation, receiving educational information, or participating in Foundation community programs does not by itself create a physician-patient, therapist-patient, attorney-client, researcher-participant, fiduciary, or other professional relationship.

Any such relationship must be established separately with the applicable professional, institution, or research program.

19. International Users

The Foundation is based in the United States but serves an international OCNDS community.

Users accessing the website from outside the United States are responsible for complying with laws applicable in their location.

Certain programs, studies, services, or resources may not be available in every jurisdiction.

20. Governing Law

These Terms are governed by the laws of the State of California, without regard to conflict-of-law principles, except where applicable law requires otherwise.

Any dispute relating to these Terms or use of the website will be subject to the jurisdiction and venue provided by applicable law.

21. Changes to These Terms

The Foundation may update these Terms of Use from time to time to reflect changes in the website, Foundation programs, or applicable requirements.

The current version and date of the most recent update will be posted on the website.

Continued use of the website after updated Terms are posted constitutes acceptance of the revised Terms to the extent permitted by applicable law.

22. Contact Us

If you have questions about these Terms of Use, please contact:

CSNK2A1 Foundation
1395 Marsten Rd.
Burlingame, CA 94010 

Email: info@csnk2a1foundation.org
Phone: (415) 501-0147