A community-driven nonprofit advancing research, empowering families, and accelerating the path to treatments and a cure for CSNK2B. The CSNK2B Foundation ("Foundation," "we," "our," or "us") is committed to protecting the privacy of the individuals and families we serve worldwide. As an international nonprofit organization dedicated to improving the lives of people affected by CSNK2B Neurodevelopmental Syndrome (Poirier-Bienvenu Neurodevelopmental Syndrome), we recognize the importance of safeguarding personal information while advancing research, education, advocacy, and community support. By using our website, social media platforms, participating in our programs, or communicating with us, you agree to this Privacy Policy. This may include:
Name
Email address
Mailing address
Phone number
Country or region of residence
Information you provide through contact forms
Newsletter subscriptions
Event registrations
Volunteer information
Donation information
Information submitted for patient registries or research opportunities
Information you choose to share regarding a CSNK2B diagnosis, medical history, treatments, or lived experience
We may also collect technical information such as:
IP address
Browser type
Device information
Website usage analytics
Cookies and similar technologies
Research and Health Information
The Foundation supports research to accelerate treatments and ultimately a cure for CSNK2B. Participation in research studies, registries, surveys, or natural history projects is always voluntary. When health information is collected, it may be managed directly by the Foundation or through trusted research partners, healthcare institutions, universities, or technology platforms. Additional informed consent may be required for specific research activities. Health information is handled using reasonable administrative, technical, and organizational safeguards appropriate to the nature of the information. How We Use Your Information
We use information to:
Respond to inquiries
Provide family support
Send newsletters and updates
Register participants for events
Coordinate advocacy initiatives
Connect families with research opportunities
Improve our programs
Analyze aggregate trends
Comply with legal obligations
Advance research related to CSNK2B
We use only the information necessary for these purposes. Sharing Information
We do not sell personal information. We may share information with trusted service providers or collaborators who help us fulfill our mission, including:
Research institutions
Universities
Healthcare organizations
Technology vendors
Payment processors
Email communication providers
Patient registry platforms
Professional advisors
Information is shared only when appropriate safeguards are in place and only for legitimate nonprofit or research purposes. Where possible, research information is shared in de-identified or aggregated form. International Users
The Foundation serves families around the world. If you provide information from outside the United States, you understand that your information may be transferred to and processed in the United States or other countries where our service providers or research collaborators operate. We strive to protect personal information in accordance with applicable international privacy laws, including the General Data Protection Regulation (GDPR), where applicable. Your Privacy Rights
Depending on where you live, you may have the right to:
Access your personal information
Correct inaccurate information
Request deletion of your information
Withdraw consent where consent is the basis for processing
Restrict or object to certain processing activities
Request a copy of your personal information
Requests may be submitted using the contact information below. Cookies
Our website may use cookies and similar technologies to improve website performance, understand visitor activity, and enhance your experience. You may control cookies through your browser settings. Third-Party Websites
Our website and social media pages may contain links to other organizations, research partners, or external resources. We are not responsible for the privacy practices of those websites. Donations
Donations are processed securely through third-party payment providers. The Foundation does not store complete payment card information. Data Security
We maintain reasonable physical, technical, and administrative safeguards designed to protect personal information from unauthorized access, disclosure, alteration, or destruction. No method of electronic transmission or storage can be guaranteed to be completely secure. Children's Privacy
Because CSNK2B primarily affects children, parents and legal guardians may provide information on behalf of minors. We encourage parents and guardians to review any information submitted before sharing it. Social Media
Interactions on our page and other social media platforms are governed by the privacy policies of those platforms. Please do not post private medical information in public comments. Changes to This Policy
We may update this Privacy Policy periodically. The updated version will be posted on this page with a revised effective date. Contact Us
CSNK2B Foundation
Website: www.csnk2b.org
Email: [email protected]
