CSNK2A1 Foundation Community Privacy Notice

Last Updated: September 2026


The CSNK2A1 Foundation respects the privacy of individuals and families affected by Okur-Chung Neurodevelopmental Syndrome (OCNDS).


This Community Privacy Notice explains how the Foundation collects, uses, stores, protects, and shares personal information provided to us by members of the OCNDS community.


It applies to information provided through the Foundation’s OCNDS Contact Registry and other Foundation community programs and activities.


Our separate Website Privacy Policy addresses information collected through use of our website, including cookies, analytics, and other website technologies.

1. Information We May Collect


Depending on how you interact with the Foundation, we may collect information about you and/or an individual affected by OCNDS, including:


  • name and contact information;
  • mailing address;
  • country, state, region, or other general location information;
  • relationship to the individual affected by OCNDS;
  • date of birth or age;
  • diagnosis information;
  • CSNK2A1 genetic variant information;
  • health, developmental, behavioral, or other information you voluntarily provide;
  • information about your family’s needs, experiences, interests, or priorities;
  • communication preferences;
  • preferences relating to optional Foundation community programs;
  • information needed to participate in Foundation programs, events, activities, or private community spaces; and
  • other information you voluntarily provide to the Foundation.


We seek to collect only information reasonably relevant to the applicable Foundation activity.

2. Our OCNDS Contact Registry


The CSNK2A1 Foundation maintains a worldwide contact registry of individuals diagnosed with OCNDS.


The Contact Registry helps us understand and serve the OCNDS community, communicate with families, provide access to Foundation programs and private community spaces, and help ensure that individuals are connected with the community that corresponds to their diagnosis.


We may use Contact Registry information to:


  • maintain an accurate worldwide count of individuals registered with the Foundation;
  • understand the geographic reach of the OCNDS community;
  • maintain aggregate counts of reported CSNK2A1 genetic variants;
  • better understand the age distribution, needs, interests, and characteristics of the OCNDS community;
  • communicate with families about Foundation programs, resources, events, research opportunities, and medical or scientific information relevant to OCNDS;
  • confirm diagnosis and eligibility for private OCNDS community spaces;
  • administer optional community programs, such as the Foundation’s birthday card program;
  • help individuals and families connect with the appropriate diagnosis community when needed; and
  • support Foundation planning, programming, education, and community outreach.

3. Why We Request Genetic Variant Information


We request the CSNK2A1 genetic variant because OCNDS can be confused with other similarly named genetic conditions.


For example, Chilton Okur-Chung Neurodevelopmental Syndrome is a different genetic condition from Okur-Chung Neurodevelopmental Syndrome (OCNDS).


Collecting variant information helps us maintain an accurate OCNDS Contact Registry and, when appropriate, helps us direct individuals and families to the community that corresponds to their diagnosis.


Individual genetic variant information is maintained by the Foundation for registry administration and community purposes.


The Foundation does not provide an individual’s genetic variant to Regional Ambassadors, other families, or the public unless the individual or family has separately authorized that disclosure or the disclosure is otherwise permitted or required by law.


Variant information may be used or reported in aggregate or de-identified form.

4. Private OCNDS Community Spaces


The Foundation maintains private community spaces, including a closed Facebook group, where individuals and families may connect, exchange experiences, and discuss personal matters.


Before granting access to certain private OCNDS community spaces, the Foundation may use diagnosis and genetic variant information to confirm that an individual or family belongs to the appropriate diagnosis community.


We do this because members may choose to share personal, medical, developmental, behavioral, or other sensitive information in these spaces. Verification helps provide members with greater confidence that the people participating in the group are members of the intended OCNDS community.


However, the Foundation cannot guarantee the confidentiality of information that members voluntarily disclose to other participants in a private community space. Members should use their own judgment about the information they choose to share.


Private spaces hosted on third-party platforms, such as Facebook, are also subject to the privacy practices and terms of those platforms.

5. Public OCNDS Map


The Foundation maintains a public map showing the geographic reach of the OCNDS community.


The map does not display names or contact information. Because OCNDS is rare, however, geographic information may sometimes make an individual or family recognizable even when direct identifiers are not shown.


Families may request at any time that their location not be displayed on the public map.


For new Contact Registry participants, the Foundation may ask whether they wish to be represented on the public OCNDS map.


When a family is represented on the map, the Foundation displays only approximate geographic information and does not display the individual’s or family’s name or other direct identifying information.

6. Optional Community Programs


The Foundation may offer optional community programs, including programs such as birthday cards for individuals with OCNDS.

Participation in optional programs is voluntary.


For programs that require additional use of personal information, such as date of birth or mailing address, the Foundation may ask families to opt in.


Families may change their preferences for optional programs at any time.

7. How We Store and Manage Community Information


Information provided to the Foundation may be maintained in one or more systems used to operate Foundation programs and manage relationships with the OCNDS community.


This may include the Foundation’s customer or constituent relationship management system (“CRM”), communications platforms, restricted-access spreadsheets, secure document or data-storage systems, event or program management systems, and other technology used by the Foundation.


Information may be entered into the Foundation’s CRM so that we can maintain accurate community records, communicate with families, manage Foundation programs, track relationships and interactions, and avoid asking families to repeatedly provide the same information.

8. Research Opportunities and Research Participation


The Foundation supports, promotes, and may conduct research intended to improve understanding of OCNDS and advance better care and treatments.


The Foundation may use Contact Registry information to notify individuals and families about research opportunities that may be relevant to them.


The Foundation may also use Contact Registry information to identify individuals or families who may be potentially eligible for or interested in a research opportunity.


Being identified or contacted about a research opportunity does not enroll an individual in research.


Submitting information to the OCNDS Contact Registry does not enroll you or your family member in a research study and does not constitute consent for identifiable Contact Registry information to be used for research.


When identifiable information is collected, accessed, or used as part of a research study, that activity is governed separately by the applicable research protocol, informed consent or authorization, Institutional Review Board requirements, research agreements, Foundation policies, and applicable law.


The applicable research materials will describe the information being collected, how it may be used or shared, and other requirements relevant to that particular study when required.

9. Foundation Community Analysis and Research Planning


The Foundation may analyze information from its Contact Registry and other community programs to better understand the OCNDS community and improve Foundation programs and planning.


For example, the Foundation may analyze information about:


  • the number of registered individuals;
  • countries or regions represented;
  • age distribution;
  • reported genetic variants;
  • family needs and priorities;
  • participation in Foundation activities; and
  • topics or programs of interest to the community.


These activities may include internal analysis using identifiable information where reasonably necessary for Foundation operations.

The Foundation may also create and use aggregate or de-identified information for community planning, education, scientific or research planning, and other activities consistent with the Foundation’s mission and applicable requirements.


Using Contact Registry information for Foundation community analysis or to identify potential research opportunities does not itself enroll an individual in research.

10. Aggregate and De-identified Information


The Foundation may create, use, and share aggregate or de-identified information to better understand the OCNDS community, support Foundation planning and education, and advance the Foundation’s mission.


Because OCNDS is rare, information that does not directly include a person’s name may sometimes still make an individual or family recognizable when combined with other information.


The Foundation therefore seeks to limit the amount and specificity of information included in public reporting when there is a reasonable risk that an individual or family could be identified.


For example, we may publicly report:


  • the total number of individuals registered with the Foundation;
  • the number of countries represented;
  • aggregate counts of reported CSNK2A1 variants;
  • general information about community needs, priorities, or characteristics; and
  • approximate geographic information showing the worldwide distribution of the OCNDS community.


The Foundation does not intend for aggregate or de-identified reporting to identify individual families.

11. How We May Share Personal Information


The Foundation does not sell or rent personal information about OCNDS individuals or families.


We may share personal information when reasonably necessary to operate the Foundation, provide a requested program or service, or otherwise carry out the purposes described in this Notice.


This may include sharing information with third-party service providers that assist us with:


  • CRM services;
  • email and communications;
  • information technology;
  • secure data or document storage;
  • website administration;
  • event or program registration;
  • payment or donation processing;
  • professional services; or
  • other Foundation operations.


These service providers may receive personal information only to the extent reasonably necessary to provide services to the Foundation and are expected to handle information in accordance with applicable contractual and legal requirements.


We may also disclose information:

  • when you have asked or authorized us to do so;
  • when necessary to provide a program, service, or activity you requested;
  • when required by applicable law, regulation, court order, or legal process;
  • when reasonably necessary to protect the rights, safety, or security of an individual, the Foundation, or others; or
  • as otherwise permitted by applicable law.

12. Regional Ambassadors, Volunteers, and Community Leaders


The Foundation works with Regional Ambassadors, Parent Advisory Board members, volunteers, and other community leaders.


Serving in one of these roles does not automatically provide access to the Foundation’s identifiable Contact Registry information, individual genetic variant information, or other sensitive family information.


The Foundation seeks to limit access to identifiable information based on an individual’s role and the information reasonably necessary to perform that role.

13. Data Security


The Foundation takes reasonable administrative, technical, and organizational measures to protect personal information from unauthorized access, use, alteration, loss, or disclosure.


Access to identifiable Contact Registry information is restricted to a limited number of authorized Foundation personnel. Registry information is maintained in restricted-access systems protected by access controls and multifactor authentication, and public sharing is disabled.


No method of electronic storage, processing, or transmission is completely secure, however, and the Foundation cannot guarantee absolute security.

14. Security Incidents and Data Breaches


If the Foundation becomes aware of a security incident involving personal information, we will take reasonable steps to investigate the incident, contain and mitigate potential harm, and address the cause of the incident.


The Foundation will notify affected individuals, regulatory authorities, or others when notification is required by applicable law.


The actions taken in response to a security incident will depend on the nature and circumstances of the incident and the information involved.

15. Information About Children and Other Dependents


Many individuals affected by OCNDS are children or adults who rely on parents, guardians, caregivers, or other legally authorized representatives.


The Foundation therefore routinely receives information about an individual with OCNDS from a parent, legal guardian, caregiver, or other authorized representative.


When you provide personal information about another individual, you represent that you are authorized to provide the information or otherwise have an appropriate basis for doing so.


As an individual reaches adulthood, additional permissions, authorizations, or documentation may be needed depending on the individual’s circumstances and the applicable Foundation activity.

16. Communications


The Foundation may use contact information provided to us to communicate about:


  • Foundation news and programs;
  • family resources;
  • events and community activities;
  • research opportunities;
  • scientific or medical information relevant to OCNDS;
  • surveys or requests for community input;
  • advocacy opportunities;
  • fundraising or Foundation campaigns; and
  • administrative matters relating to your relationship with the Foundation.


You may unsubscribe from many types of general Foundation email communications by using the unsubscribe option included in the communication or by contacting us.


Certain administrative or transactional communications may still be sent where necessary.

17. Donations, Events, and Other Foundation Activities


If you donate to the Foundation, register for an event, participate in a fundraising campaign, purchase an item, or participate in another Foundation activity, additional information may be collected by the Foundation or by a third-party provider acting on our behalf.


Payment card or similar financial information may be processed directly by third-party payment processors rather than stored by the Foundation.


Third-party platforms may also have their own privacy policies and terms.

18. How Long We Keep Information


The Foundation retains personal information for as long as reasonably necessary for the purposes for which it was collected and for legitimate Foundation, legal, regulatory, recordkeeping, historical, financial, or operational purposes.


Different types of information may be retained for different periods depending on their purpose.


Because OCNDS is a rare genetic condition and the Foundation maintains a long-term worldwide community registry, certain Contact Registry information may be retained for an extended period to maintain an accurate historical understanding of the OCNDS community.


Where appropriate, information that is no longer needed may be deleted, de-identified, or archived.

19. Your Choices and Requests


You may contact the Foundation to:


  • update or correct information you previously provided;
  • change your communication preferences;
  • change your preferences for optional community programs;
  • request that your family not be represented on the public OCNDS map;
  • ask how your information is being used;
  • request access to certain information we maintain about you;
  • request deletion or restriction of certain information where appropriate; or
  • ask questions or raise concerns about the Foundation’s privacy practices.


These requests may be subject to applicable law and legitimate Foundation obligations.


The Foundation may need to retain certain information for legal, financial, research, recordkeeping, historical, or other legitimate purposes.

20. International OCNDS Community


The Foundation serves individuals and families throughout the world.


Information provided to the Foundation may be stored or processed in the United States or through service providers operating in other jurisdictions.


Where applicable, the Foundation seeks to handle personal information in accordance with applicable privacy and data-protection requirements.

21. Third-Party Organizations, Researchers, and Research Partners


The Foundation may provide information or links regarding researchers, hospitals, universities, registries, natural history studies, advocacy organizations, research platforms, or other outside programs and organizations.


If you choose to provide information directly to one of these organizations, the information you provide is subject to that organization’s privacy practices, research consent materials, and other applicable terms.


This Community Privacy Notice does not govern information that you independently provide directly to another organization.


We encourage families to review the applicable privacy notice, consent form, authorization, or other terms before providing personal information to a third party.

22. Changes to This Notice


The Foundation may update this Community Privacy Notice from time to time to reflect changes in our practices, programs, technology, or legal requirements.


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


If a change materially affects how we use previously collected personal information, we will take additional steps where required by applicable law.

23. Contact Us


If you have questions about this Community Privacy Notice, would like to update information you have provided, or have concerns about how the Foundation handles personal information, please contact:


CSNK2A1 Foundation
1395 Marsten Rd.
Burlingame, CA 94010


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