Privacy Policy, User Agreement, & Community Guidelines

Privacy Policy

Last updated July 7, 2023




We are a site for Registered Users (described below) who are scientist-grantees participating in the Neurodegeneration Challenge Network (and certain individuals affiliated with those grantees) to communicate and collaborate with their fellow grantees about their work (“Services”). Content and data on our Services is intended to be viewable only by our community of grantees and certain affiliated individuals. As a Registered User of our Services, the collection, use and sharing of your personal data is subject to this Privacy Policy.


Note: This Privacy Policy covers only what our practices are. Please see the Discourse privacy policy for their data collection and use practices.


1. Data Controllers and Acceptance of Privacy Policy


By accessing and using the Services, You are contracting with Chan Zuckerberg Foundation, a 501(c)(3) private foundation (“Provider,” “we” or “us”). Provider will be the contracting party or “controller” of your personal data provided to, or collected by or for, or processed in connection with our Services. This Privacy Policy along with the User Agreement form a contract. If you do not agree with this Privacy Policy or the User Agreement, do not access or use the Services. This Privacy Policy applies to only these Services, and excludes any other services that state that they are offered under a different privacy policy.


2. Data We collect


Data You Provide To Us.

  • Registration. To become a Registered User, you need to provide certain personal identifiers, such as your name, email address and a password. At the time of registration we may ask for other types of data about you, some of which will be “required” and other that will be optional, but relevant to the Services. It’s your choice whether to include sensitive information on your profile and to make that sensitive information public. Please do not post or add personal data to your profile that you would not want to be publicly available.
  • Posting Content. We collect personal data from Registered Users when you provide, post or upload it to our Services, such as when you fill out a form, respond to a survey, like or follow or post “content” or links to the Service.
  • Messages and Support. We may collect personal data from you if you should contact us for support, or when we engage with you in messaging about the Services.
  • Sensitive Personal Information. Unless you decide to post sensitive personal information to the Services, we do not collect, use, or disclose sensitive personal information.


Data From Others. Others may post or write about you in connection with the Services. For example, another Registered User may post content on our Services that includes information about you such as a citation to an article you have written.


Data From Your Browser or Device.


Whenever you use any online service, certain information gets created and logged automatically; the same is true when you access or use the Services. Here’s what we collect:

  • Log. When you access or use the Services (whether on your computer or on a mobile device), we gather certain internet or other electronic network activity information automatically and store it in log files. This information includes IP addresses, the Internet Service Provider, referring/exit pages, date/time stamps, clickstream data, login/logout times, and duration of time spent on the Services.
  • Device. In addition to log data, we collect information about the device you’re using to access the Services; this includes the type of device, browser type, operating system, settings, unique device identifiers, and crash data that helps us understand when something goes wrong.
  • Cookies and Other Similar Technologies. We also use cookies (small text files sent by your computer each time you access the Services that are unique to your device or your browser) and similar technologies. For example, we use analytics services (e.g. Google Analytics) that place cookies that collect information that allows us to understand how often you use the Services, where you are accessing the Services from and events that happen on the Services.


3. How We Use Your Data


CZIF does not share your information for behavioral advertising purposes or sell, rent, or lease your personal data to others. We use your data for the following business purposes:

  • Services.  We use the information we collect to provide or serve our Services, and maintain and improve the Services, including understanding the content that Registered Users find valuable.
  • Communications.  We may also use your information to directly communicate with you about your use of the Services or to respond to an email, submission, or takedown request from you. 
  • Aggregate Insights.  We use your data to produce and share aggregated insights that do not identify you. For example we may use your data to generate statistics about location of our Registered Users, and how many active Registered Users engage in the Registered Services on a monthly basis.
  • Security and Investigations.  We use your data (including your communications) if we think it’s necessary for security purposes or to investigate violations of our User Agreement (including Community Rules) or this Privacy Policy and/or attempts to harm our Registered Users.  We may use human and automated systems and inferences we make to determine whether you or others can be trusted to participate with others or engage with our Services.


4. Retention and Deletion


We retain your personal data while your account is in existence or as needed to provide you Services. This includes data you or others provided to us and data generated or inferred from your use of our Services.


5. How We Disclose Information


Except in the instances listed below, we will not disclose your personal information to others unless you consent to it, nor will we ever sell your personal information to advertisers or other third parties. However, we disclose your information in the following ways:

  • Our Services.  Any data that you include on your user profile (except for your contact information) and any content you post you take on our Services will be seen by others.  Our Services allow viewing and sharing information including through posts, and comments.  When you share an article or a post (e.g., an update, image, link or article) it may be viewed by others (and can possibly be copied by them). 
  • Service Providers.  CZIF works with vendors, service providers, and other partners that help us provide the Services. These services are, for example, sending emails, performing statistical analysis, database management services, database hosting, providing customer support software, and security. Specifically,  and by way of example, we use Discourse to power the Registered Services and your use of the Registered Services which is also subject to their privacy policy.  They will have access to your information as reasonably necessary to perform these tasks on our behalf and are obligated not to disclose or use it for other purposes.
  • Legal and Safety Reasons.  We may disclose information if we believe in good faith that it’s necessary (a) in connection with any legal investigation; (b) to comply with relevant laws or to respond to subpoenas or warrants served on us; (c) to protect or defend our rights or property or Registered Users of our Services or others; and/or (d) to investigate or assist in preventing any violation of the law.
  • CZIF Affiliates.  We may share your information with our affiliates, in which case we will require them to honor this Privacy Policy. As an example, we share your information with The Chan Zuckerberg Initiative, LLC (“CZI LLC”) who is CZIF’s primary technology partner, focusing on supporting the Services’ infrastructure, security, and compliance. As part of that role, CZI will use data only as described in this Privacy Policy and to support and benefit CZIF operation and improvement of the Services.
  • Reorganization, Sale or Merger. We may share your information in connection with a merger, reorganization, or sale of all or a portion of our organization or assets related to CZIF. In the event of a merger, reorganization or sale of assets, the buyer or other successor entity will continue to be bound by the terms of this Privacy Policy.


6. Choices and Rights




You have the following rights with respect to the personal data we have about you:

  • Delete data. You can use features of the Service to delete your personal data, and you can ask us to erase or delete all or some of your personal data.
  • Change or correct personal data. You can edit some personal data through the Services. You can also ask us to change, update or fix your data in certain cases, particularly if it’s inaccurate.
  • Object to, limit, or restrict use of personal data. You can ask us to stop using all or some of your personal data (e.g., if we have no legal right to keep using it) or to limit our use of it (e.g., if your personal data is inaccurate or unlawfully held).
  • Right to access and/or take your personal data. You can ask us for a copy of your personal data in machine-readable form.
  • The right not to be discriminated against. CZIF will not discriminate against you in any manner for exercising any of the above rights with respect to your personal data.
  • Right to notice. You have a right to receive notice of our personal information collection, use, retention, and disclosure practices at or before collection of personal information.


If you would like to exercise your right to any of the above, email us at In the email, please provide us with your name, the country (and state if within the United States) in which you live, which of the above rights you would like to exercise, and sufficient information that allows us to reasonably verify that you are the person about whom we collected personal information. If you would like an authorized agent to make a request for you, have that agent email with the above information along with additional information sufficient for us to verify that the authorized agent is acting on your behalf. Please also let us know if you have questions or concerns related to exercising any rights you have under applicable law to control your personal information.


If you would like to appeal a CZIF decision with respect to a request to exercise any of these rights, please email us at and explain the basis for your appeal. 


If you wish to raise a concern about our use of your information (and without prejudice to any other rights you may have), you have the right to do so with your local supervisory authority.


Account Closure. Registered Users have the right to close their account.  If you choose to close your account, your personal data will generally stop being visible to others on our Services within 3 business days. We generally delete or de-identify closed account information within 30 days of account closure, except as noted below. We retain your personal data even after you have closed your account if reasonably necessary to comply with our legal obligations (including law enforcement requests), meet regulatory requirements, resolve disputes, maintain security, prevent fraud and abuse, enforce our User Agreement, or fulfill your request to “unsubscribe” from further messages from us. We will retain de-identified information after your account has been closed.


7. Data Transfers.


CZIF is based in the United States; when you engage with the Services, you are sending personal data into the United States which may have different data protection rules than those of your country. We process data both inside and outside of the United States.


8. Our Legal Bases.


We will collect, use and share your personal data only where we have a legal right to do so. This section explains our legal bases for processing personal data, including under GDPR.

  • Consent. We rely on consent to engage in certain data collection activities, like through cookies.
  • Legitimate Interests. We rely on legitimate interests to process the data we collect when you use the Services. We process this data based on our legitimate interest in understanding how the Services are being used, and your legitimate interest in accessing the Services.
  • Contract. We rely on contract where processing is necessary for the performance of a contract with you (e.g. to deliver the Services you have requested).


Where we rely on consent, you have the right to revoke your consent and where we rely on legitimate interests, you have the right to object by emailing us at If you have any questions about the lawful bases on which we collect and use your personal data, please contact us.


9. Additional Information for California Residents


The California Consumer Privacy Act (“CCPA”) requires certain businesses to give California residents a number of rights regarding their personal information. We are offering these rights to you, including the right to have your personal information deleted (subject to certain exceptions), the right to change or correct your personal information, the right to limit the use or disclosure of your sensitive personal information (if applicable), the right to access your personal information, the right to opt-out of the “selling” or “sharing” of personal information (if applicable), and the right not to be discriminated against for exercising these rights.


These rights, and how to exercise them, are described in more detail in Section 6 of this Privacy Policy. In addition to these rights, we give you a right to request the following information about your personal information that we have collected in the past 12 months:


The Right to Know. This right allows you to request the following information about the personal information that we’ve collected about you in the past 12 months:

  • Information about Data Collection
    • The categories of personal information that have been collected.
    • The categories of sources from which we have collected personal information.
    • The business purpose for which we have collected personal information.
  • Information about Data Disclosure
    • The categories of personal information, if any, that have been sold, shared, or disclosed for a business purpose to third parties.
    • The categories of third parties to whom personal information was sold, shared, or disclosed for a business purpose.
    • Identification of the specific business purpose for disclosing the personal information.


We have described in fuller detail in this Privacy Policy the personal information that we collect, how we use, and disclose it, but provide the following additional disclosure:


Information about Data Collection

  • Information we collect. We have collected the following categories of personal information from consumers within the past 12 months: (1) identifiers; (2) internet or other electronic network activity; (3) geolocation data; (4) user generated content such as your posts; and (5) inferences drawn from internet or other electronic network activity. 
  • Sources of information. We obtain these categories of personal information from the sources described in Section 2 of this Privacy Policy.
  • Purposes of collection. We collect personal information for one or more of the business purposes described in the Section 3 of this Privacy Policy.


Information about Data Disclosure

  • Information we disclose. We have disclosed the following categories of personal information within the past 12 months: (1) identifiers; (2) internet or other electronic network activity; (3) geolocation data; (4) user generated content such as your posts; and (5) inferences drawn from internet or other electronic network activity.
  • Third parties to whom we disclose. We disclose personal information as described in Section 5 of this Privacy Policy.
  • Purposes of disclosure. We disclose the personal information we collect for one or more of the business purposes described in Section 3 of this Privacy Policy.


10. Additional Information for Residents of Virginia, Colorado, Connecticut, and Utah


Virginia, Colorado, Connecticut, and Utah also have adopted privacy laws that give consumers certain rights, including the right to confirm whether businesses are processing the consumer’s personal information, the right to access that data, the right to obtain a copy of that data, the right to correct inaccuracies in that data, and the right to delete that data. As discussed above in Section 6, CZIF provides these rights to all consumers, regardless of where they reside.


Additionally, these four states have adopted rights to opt-out of: (1) targeted advertising; (2) the sale of personal information; and (3) profiling in furtherance of decisions that produce legal or similarly significant effects concerning the consumer. CZIF does not: use your information for targeted advertising, sell your information, or profile consumers in furtherance of decisions that produce legal or similarly significant effects.


11. Other Important Information

  • Security.  Security of personal data is important to us. We implement security safeguards designed to protect your personal data, including reasonable administrative, technical and physical safeguards designed to protect personal data from unauthorized access, use, alteration and destruction. Despite these efforts, we cannot guarantee that your data may not be accessed, disclosed, altered, or destroyed by a breach of any of our physical, technical, or administrative safeguards. Please notify us immediately at if you become aware of any security issues relating to our Services.
  • Direct Marketing and Do Not Track Signals.  We don’t currently share personal data with third parties for their direct marketing purposes, nor do we support any Do Not Track signals since there’s currently no standard for how online services respond to those signals.
  • Changes. We may modify this Privacy Policy from time to time, and you can see when the last update was by looking at the “Last Updated” date at the top of this page. If we make material changes to it, we’ll provide you notice through this Privacy Policy. If you object to any changes and are a Registered User, you may close your account and no longer access or use the Services. Your continued use of the Services after we publish a notice about changes to this Privacy Policy means that you acknowledge the updated Privacy Policy following the date it takes effect.
  • Children. The Services are not designed or intended for children under 16 and we do not have actual knowledge that we have sold or shared the personal information of users under 16 years of age. If we become aware that we have the information of such children collected through the Services, we will promptly delete it.
  • Contact Information.  If you have questions or complaints regarding this Privacy Policy, please contact us at If contacting us does not resolve your complaint, residents in the European Union (and some other countries) also have the right to contact their local data protection authorities. If you are looking to contact our representative for the European Union, reach out to


See Section 10 of the User Agreement for contact information.

User Agreement

[There is no prior version of this privacy policy]



This User Agreement applies to everyone who visits our website (“You”) and those who access and use our services, as described below.

The purpose of these services is to provide a space for scientists participating in the Neurodegeneration Challenge Network (NDCN) to learn more about, communicate, and collaborate with their fellow grantees.  Any discussions which include confidential information or data about individuals should happen through more private and secured communication methods and should not be included in this “community” platform.


  • Contract and Services


1.1 Contract and Provider.  When you use our Services you agree to all of these terms. Your use of our Services is also subject to our Privacy Policy (see below), which covers how we collect, use, share, secure and store your personal information.  We partner with Discourse to provide their services, so your use of the Services is also subject to your compliance with their terms. 


You agree that by registering for, accessing or using our Services, you are entering into a legally binding contract with Chan Zuckerberg Initiative Foundation, a 501(c)(3) nonprofit private foundation (“Provider,” “we” or “us”), even if you are using our Services on behalf of an organization. If you do not agree to this contract (“User Agreement”) or our Privacy Policy, do not register for, access, or otherwise use any of our Services. If you wish to terminate this User Agreement, you are free to do so at any time by closing your account and no longer accessing or using our Services.


1.2 Services.  This User Agreement applies to (“Web Services”) and the NDCN Network forum (“Registered Services”; together with the Web Services, the “Services”). This User Agreement applies to those who have registered as users of the Services (“Registered Users”).

1.3 Change.   We may modify this User Agreement and our Privacy Policy from time to time in our discretion. If we make material changes to it, we will provide you notice through our Services to give you the opportunity to review the changes before they become effective. We agree that changes cannot be retroactive. If you object to any changes, you may stop using or accessing the Services. Your continued use of our Services after we publish or send a notice about our changes to these terms means that you are consenting to the updated terms following their effective date.


  1. Obligations

2.1 Visitors. Visitors to the Web Services who are not Registered Users may be given the opportunity to request an invite to the community or contact us in connection with the Services (see below).  Registered Services are only available for Registered Users. 


2.2 Registered Users and Registered Services.

(a) Registered Services Eligibility.  Only invited grantees of the NDCN network that have entered into this User Agreement (and Privacy Policy) are eligible to access the Registered Services.  Creating an account with false information is a violation of our terms.


(b) Accounts and Passwords.  Registered Users are account holders. As a Registered User, you agree to: (1) choose a strong and secure password; (2) keep your password secure and confidential; (3) not transfer or share  your account; and (4) follow applicable law and the terms of this User Agreement, including our Community Participation Guidelines. You are responsible for anything that happens through your account unless you report misuse.


(c) No Payment:  The Services are provided at no charge. 


(d) Notices and Messages: You agree that we will provide notices and messages to you related to the Services within the Service.


  1. Rights and Limits.

3.1. Your License to Us.  Our Services include features that require you (e.g. registration) and enable you (e.g. when you volunteer to answer a survey) to provide information and content.  As between you and us, you own the content and information that you submit or post to the Services, and you are granting us only the following non-exclusive license:


A worldwide, transferable and sublicensable right to use, copy, modify, distribute, and process feedback, information and content that you provide through our Services (including any surveys responses), without any further consent, notice and/or compensation to you or others. The license rights you grant to us are limited in the following ways:


  1. If we agree to additional restrictions on use of content in the context of our collection of it, we will honor those additional limits.
  2. By submitting suggestions or other feedback related to our Services to us, you agree that we can – but are not required to – use and share  such feedback for any purpose without compensation to you.  Any limits we agree to with respect to feedback, information and content provided by you, does not apply to any ideas you may provide to us.  
  3. You and we agree that if content you provide to us includes personal data, it is subject to our Privacy Policy.
  4. Because you own your content and information and we only have non-exclusive rights to it, you may choose to make it available to others,.

3.2  Your Content.   You agree to only provide content or information that does not violate applicable law nor anyone’s rights (including intellectual property rights and privacy rights). 


3.3 Service License and Availability.  We may change, suspend or end any Service in our discretion. To the extent allowed under law, these changes will be effective upon notice provided to you.  You agree that we have no obligation to store, maintain or provide you a copy of any content or information that you or others provide, except to the extent required by applicable law.


3.4 Limits.  You agree that your use of the Service is subject to compliance with these terms and our Community Participation Guidelines.  We reserve the right to limit your use of the Services. If we believe that you may be in breach of this User Agreement, applicable law, or are misusing the Services, we reserve the right to restrict, suspend, or terminate your access to the Services.


3.5 Intellectual Property Rights.  Subject to the terms of this User Agreement,  we grant you a limited right to access the Services and we reserve all other of our intellectual property rights in the Services. Using the Services does not give you any ownership in our Services or the content or information made available through our Services that is not already yours. Trademarks and logos used in connection with the Services are the trademarks of their respective owners. Our logos and other service marks, graphics, and logos used for our Services are trademarks or registered trademarks of ours and this User Agreement does not grant you any rights to use them.


  1. Disclaimer and Limit of Liability  


4.1   Tools and Information.  The Service may include information about third-party tools, resources and advice that we or other Registered Users who have posted information believe that you may find useful.  Please exercise your own due care in deciding whether to use a third-party service, rely on information or follow advice; this information has not always been vetted for accuracy, and even if accurate may not be appropriate for you or your purposes.  PLEASE ALWAYS USE YOUR OWN DISCRETION AND CONSULT WITH YOUR OWN ADVISORS BEFORE USING ANY SUCH TOOL, RESOURCE OR ADVICE. THIRD-PARTY TOOLS AND SERVICES ARE NOT UNDER CZIF’S CONTROL, AND, TO THE FULLEST EXTENT PERMITTED BY LAW, CZIF WILL NOT RESPONSIBLE OR LIABLE FOR YOUR USE OF THESE TOOLS OR SERVICES. If you believe that any tools, resources or advice is incorrect, unsafe or violates our terms, you can report it to us by sending a message to].










  1. Termination.  


Either of us may terminate this User Agreement at any time without notice to the other. On termination, you lose the right to access or use the Services. The following shall survive termination (1) our rights to use and disclose your content and feedback;  (2) sections 4, 5, 6 and 7;  and (3) any amounts owed by either party prior to termination remain owed after termination.


  1. Governing Law and Dispute Resolution and Mutual Agreement to Arbitrate




  1. Applicability.  You and the CZI Parties agree that all Disputes, including Enforceability Disputes, will be resolved exclusively in binding arbitration on an individual basis, except that you and the CZI Parties are not required to arbitrate IP Disputes. Notwithstanding the foregoing, either you or the CZI Parties may bring an individual action in small claims court.
    1. A “Dispute” means a dispute, claim or controversy arising out of or relating to the CZI Parties’ products or these Terms; or whether that dispute is (1) based on past, present or future events; and (2) in contract, warranty, state, regulation, or other legal or equitable basis. 
    2. An “Enforceability Dispute” means a Dispute relating to the interpretation, applicability, or enforceability of this Arbitration Agreement, including the formation of the contract, the arbitrability of any Dispute, and any claim that all or any part of this agreement is void or voidable. 
    3. An “IP Dispute” means a Dispute relating to the ownership or enforcement of intellectual property rights.

  2. Waivers.
    1. Waiver of Jury Right.  YOU AND THE CZI PARTIES ARE EXPRESSLY GIVING UP ALL RIGHTS TO A JURY TRIAL OR COURT TRIAL BEFORE A JUDGE. The arbitrator’s decision will be final and binding on both you and us, subject to review solely on the grounds set forth in the Federal Arbitration Act (“FAA”).
    2. Waiver of Class or Consolidated Actions.  YOU AND THE CZI PARTIES AGREE THAT ALL DISPUTES MUST BE ARBITRATED OR LITIGATED ON AN INDIVIDUAL BASIS AND NOT ON A CLASS, COLLECTIVE ACTION, OR REPRESENTATIVE BASIS.  The validity of this waiver –  and whether an action may proceed as a class, collective or representative action – must be decided by a court.


  1. Initiating a Dispute.  
    1. To initiate a Dispute, a party must send to the other party written notice of that Dispute containing: (a) the name, address, and contact information of the party giving notice; (b) the facts giving rise to the Dispute; and (c) the relief requested.  
    2. You and we agree that we shall (in good faith) meet and attempt to resolve the Dispute within 30 days. If the Dispute is not resolved during that time period, then you and a representative of the applicable CZIF Party shall (in good faith) meet and attempt to resolve the Dispute through non-binding mediation with a mutually agreed-upon mediator within 30 additional days. If you and we do not reach an agreement to resolve the dispute within that 60-day period, you or we may commence an arbitration proceeding or file a claim in small claims court.  


  1. Arbitration Rules and Procedure.  
    1. Rules. The FAA governs the interpretation and enforcement of this Arbitration Agreement.  Judicial Arbitration & Mediation Services, Inc. (“JAMS”) will administer the arbitration before a single arbitrator, and the arbitration will be initiated and conducted according to the Streamlined Arbitration Rules and Procedures (the “JAMS Rules”), to the extent they are not inconsistent with the terms of this agreement. The JAMS Rules and instructions about how to initiate an arbitration are available at (as of the date of this agreement) or 1-800-352-5267.
    2. Fees.  Pursuant to the JAMS Consumer Arbitration Minimum Standards, the CZI Parties will bear all costs of the arbitration (including any JAMS Case Management Fee and all professional fees for the arbitrator’s services), except for the filing fee if you are the party initiating the arbitration. 
    3. Manner and Location of Arbitration.  You may choose to have the arbitration conducted by telephone, in writing, online, or in person. If in person, you may choose to have the arbitration conducted (a) in San Mateo County, California, (b) in the county where you live, or (c) at another location that you and we agree upon.  


  1. Confidentiality.  All aspects of the arbitration, including without limitation the record of the proceeding, are confidential and will not be open to the public, except (a) to the extent both parties agree otherwise in writing, (b) as may be appropriate in any subsequent proceedings between the parties, or (c) as may otherwise be appropriate in response to a governmental agency or legal process, provided that the party upon whom such process is served shall give immediate notice of such process to the other party and afford the other party an appropriate opportunity to object to such process.


  1. Opt-Out.  You may opt out of this Arbitration Agreement by notifying us by mail no later than 30 days after first becoming subject to it. Your notice must include your name, address, and a clear statement that you want to opt out of this Arbitration Agreement. 


  1. Severability.  If any portion of this Arbitration Agreement is found to be unlawful, void or for any reason unenforceable, then that portion shall be severed and the remainder of this Arbitration Agreement shall be given full force and effect.


  1. Governing Law and Jurisdiction. 

7.1 This User Agreement and any dispute between you and the CZI Parties will be governed by California law and/or applicable federal law (including the Federal Arbitration Act), without regard to its choice of law or conflicts of law principles.


7.2 Subject to and without waiver of the arbitration provisions above, and unless prohibited by the laws of your country, you agree that any judicial proceedings (other than small claims actions as discussed above) will be brought in and you hereby consent to the exclusive jurisdiction and venue in the state courts in the City and County of San Mateo, California, or federal court for the Northern District of California. For countries where this is not permissible, this won’t deprive you of any protection you have under the law of the country where you live, or access to the courts in that country.


  1. General Terms


If any provision in this User Agreement is held invalid or unenforceable, the other provisions will remain enforceable, and the invalid or unenforceable provision will be modified to a valid and enforceable  provision that most accurately reflects the parties intentions. 


To the extent allowed by law, the English language version of this User Agreement is binding and other translations are for convenience only. This User Agreement (including the Privacy Policy) is the only agreement between us regarding the Services and supersedes all prior agreements for the Services.


If we don’t act to enforce a breach of this User Agreement, that does not mean that we have waived our right to enforce this User Agreement. You may not assign or transfer this User Agreement (or your use of Services) to anyone without our consent. However, you agree that we may assign this User Agreement in connection with a reorganization, or to a successor or assign that agrees to assume our obligations under this User Agreement (and Privacy Policy) without your consent.   You agree that the only way to provide us legal notice is at the addresses provided in Section 10 below.

  1. Community Participation Guidelines


You agree that you will comply with our Community Participation Guidelines (see below, and incorporated here) and that you will not:


  1. Use or attempt to use another’s account or share your account with another; 
  2. Use the Services to violate the law or any school or institutional policies which apply to your use of the Services; 
  3. Disable, circumvent or intentionally bypass any security feature, access controls or use limits of the Service;
  4. Disclose information that you do not have the consent to disclose, such as confidential information of others;
  5. Violate the intellectual property rights of us or others, including copyrights, patents, trademarks, trade secrets, or other proprietary rights. For example, do not copy or distribute (except through the available sharing functionality) the posts or other content of others without their permission, which they may give by posting under a Creative Commons license; 
  6. Post anything that contains software viruses, worms, or any other harmful code; and/or
  7. Interfere with the operation of, or place an unreasonable load on, the Services (e.g., spam, denial of service attack, viruses, gaming algorithms).


  1. Complaints Regarding Content.  


We respect the intellectual property rights of others. We require that information posted by Registered Users be accurate and not in violation of the intellectual property rights or other rights of third parties.

If you believe in good faith that your work has been reproduced or is accessible on the Services in a way that constitutes copyright infringement, please provide our designated agent with the following information in writing and include “Rare As One Copyright Report” in the subject line:

  • identification of the copyrighted work or a representative list of copyrighted works claimed to have been infringed;
  • identification of the allegedly infringing material and information reasonably sufficient to permit us to locate the material;
  • your name, address and daytime telephone number, and an e-mail address if available, so that we may contact you if necessary;
  • a statement that the information in the notification is accurate, and under penalty of perjury, that the complaining party is authorized to act on behalf of the owner of an exclusive right that is allegedly infringed;
  • a statement that you have a good faith belief that the use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law; and
  • a physical or electronic signature of a person authorized to act on behalf of the owner of the exclusive right that is allegedly infringed.

Our designated agent is:, 2682 Middlefield Road, Suite i, Redwood City, CA 94063

Upon receiving a complete notice of claimed infringement, we will expeditiously remove or disable access to the allegedly infringing content. We will terminate the privileges of users who repeatedly infringe copyright. Please note that United States law provides significant penalties for falsely submitting a notice of copyright infringement.

  1. How To Contact Us

Notice under this User Agreement must be in writing and deemed to have been given on the date delivered by a nationally recognized express mail service, such as Federal Express, or by certified and registered mail (signature for receipt required) to CZIF as follows:

Chan Zuckerberg Initiative Foundation

c/o The Chan Zuckerberg Initiative

Attn: General Counsel

2682 Middlefield Road, Suite i

Redwood City, CA 94063

With a courtesy copy via email to: (email does not constitute notice)

Community Rules

We provide Services for letting our Registered Users engage with each other and us (“Community”  by sharing valuable information relevant to the the Neurodegeneration Challenge Network (NDCN) (“Purpose”).  We believe that Purpose can best be achieved in a safe and respectful Community where relevant information is shared among real people who seek to share useful information.


By accessing or using our Community features, you agree to our User Agreement and Privacy Policy, including these Community Rules (“Rules”). We may modify our Rules from time to time to help provide clarity and useful examples. If we make material changes to the Rules, we will provide notice through the site or other means.  


Be Helpful

The Community is intended to provide helpful, relevant content to users. Content you post should be relevant and authentic.  Do not post content you know or believe to be wrong or inaccurate and then portray it as accurate.


Be Respectful

We value opinions on relevant topics, and find value in a diversity of opinions.  Something that you disagree with, does not necessarily violate our Rules. We believe that being respectful to even those with differing opinions can lead to more participation and information sharing related to the Purpose.   You may question the beliefs and expertise of others as long as it is relevant and done in a respectful and non-threatening manner.


No Confidentiality

The community is not private or confidential.  Do not post information that is intended to be kept private and confidential– including information that you have a legal obligation to keep confidential, including health information related to identifiable people.


Do No Harm

  • Don’t post content that is hateful, cruel, threatening or bullying.  That includes not posting content that expresses hatred or intolerance for people on the basis of race, ethnicity, nationality, gender or gender identity, religion, sexual orientation, age, immigration status, education levels, health status, or disability.  Do not promote or support policies or organizations where such hateful views are core to the mission or ideology of the organization.
  • Don’t post content that is libelous, defamatory, harassing, or inflammatory (e.g. profanity). Don’t post content that is obscene, pornographic, or lewd, or that contains nudity or sexually explicit images.
  • Don’t post content that is intended or likely to terrorize or shock.
  • Don’t post content that violates others’ rights, such as their intellectual property rights or privacy rights.  Don’t post other people’s contact information or other personal information without their consent.
  • Don’t post content that is or links to harmful, such as phishing or malware sites.
  • Don’t impersonate other people or organizations or pretend to be someone or something you’re not.
  • Don’t repeatedly post the same content and don’t attempt to drown out other people’s opinions, including coordinating with others.
  • Don’t post content that violates law, or encourages others to violate laws or widely recognized ethical standards.



No Ads

Do not post ads, spam or other commercial promotions into the Registered Services.


No Illegal or Unethical Activity

Do not post content that encourages or supports behavior that is illegal or unethical, including violence or fraud, such as advocating, threatening, or joking about physical or financial harm to yourself or others, including terrorism.


Enforcement and Reporting Abuse

We take the integrity of the Community seriously.  If you violate our Rules, we will take down or block the relevant content and we have the right to restrict your ability to use Community or suspend or terminate your account. Misconduct may also violate laws, and can lead to legal action and civil and criminal penalties.


We encourage anyone who suspects a violation of these policies to notify us, either through “flagging features” in the product or contacting us at We will investigate and take any actions in accordance with our policies and practices.