Terms & Conditions

1. General; Purpose and Acceptance of Terms and Conditions

a. General. Your use of the FARE Patient Registry (the "Website") and the services associated with the Website (the "Services") is governed by the following terms and conditions herein (the "Terms and Conditions") and a privacy policy (the "Privacy Policy"), both of which you must read before using the Website. All pages within the Website are owned and operated by PatientCrossroads, Inc. (dba "Invitae").

b. Purpose. The purpose of the Website is to allow individuals, families and medical and research providers to register, access and search certain information in the Website's registry database.

c. Acceptance of Terms and Conditions. By using the Website, you represent that you accept and agree that you have read all of the Terms and Conditions and the Privacy Policy, understand them, and that you agree to and have the legal capacity to be bound by them.

d. These Terms and Conditions constitute a legal agreement between you and FARE Patient Registry. FARE Patient Registry reserves the right to modify these Terms and Conditions at any time in its sole discretion, and without prior notice, by posting amended terms on this Website. We encourage you to review the Terms and Conditions periodically for any updates or changes. If you do not agree to be bound by the Terms and Conditions and the Privacy Policy, you may not use the Website.

2. Ownership

All FARE Patient Registry-generated content available at the Website, including without limitation, any information, software, photographs, images, video, audio, graphics, or text on the Website ("Content"), and all patent, copyright, trademark, trade dress, domain name, trade secret, and other proprietary rights therein are the sole property of FARE Patient Registry or used by FARE Patient Registry with the permission of the owner of such content. You agree to abide by all applicable intellectual property laws and any additional restrictions set forth on the Website in relation to the Content.

3. Use of the Website

FARE PATIENT REGISTRY HEREBY GRANTS YOU A NON-EXCLUSIVE, NON-TRANSFERABLE, WORLDWIDE RIGHT TO ACCESS AND USE THE DE-IDENTIFIED PATIENT DATA SOLELY FOR YOUR INTERNAL RESEARCH OR BUSINESS USE.

IN EXCHANGE FOR THE RIGHT TO ACCESS THE FARE PATIENT REGISTRY, YOU EXPRESSLY AGREE NOT TO SELL, LICENSE, DISCLOSE, POST, PUBLISH, DISPLAY OR OTHERWISE TRANSFER THE DE-IDENTIFIED PATIENT DATA TO ANY THIRD PARTY WITHOUT THE PRIOR EXPRESS WRITTEN CONSENT OF FARE PATIENT REGISTRY.

THE DE-IDENTIFIED PATIENT DATA SHALL NOT BE (A) DISCLOSED DIRECTLY OR INDIRECTLY BY YOU TO ANY THIRD PARTY, OR (B) USED BY YOU FOR ANY COMMERCIAL PURPOSE WHATSOEVER.

YOU WILL BE LIABLE FOR UNAUTHORIZED USE OR DISCLOSURE OF DE-IDENTIFIED PATIENT DATA BY YOU OR YOUR AFFILIATES' OFFICERS, EMPLOYEES, AGENTS OR COLLABORATION PARTNER(S) (AS THE CASE MAY BE).

YOU ACKNOWLEDGE AND AGREE THAT UNAUTHORIZED USE OR DISCLOSURE OF DE-IDENTIFIED PATIENT DATA BY YOU MAY CAUSE FARE PATIENT REGISTRY IRREPARABLE HARM, AND THEREFORE AGREE THAT FARE PATIENT REGISTRY WILL BE ENTITLED TO OBTAIN EXTRAORDINARY RELIEF IN COURT, INCLUDING BUT NOT LIMITED TO TEMPORARY RESTRAINING ORDERS, PRELIMINARY INJUNCTIONS AND PERMANENT INJUNCTIONS WITHOUT THE NECESSITY OF POSTING A BOND OR OTHER SECURITY AND IN ADDITION TO AND WITHOUT PREJUDICE TO ANY OTHER RIGHTS OR REMEDIES THAT FARE PATIENT REGISTRY MAY HAVE FOR A BREACH OF THIS AGREEMENT.

4. No Unauthorized Use.

You may not attempt to gain unauthorized access to this Website or any services, other accounts, computer systems or networks connected to any server or to any of the Services, through hacking, password mining or any other means.

5. User Conduct and Responsibility

a. Security. You are solely responsible for the security of your password and your account, and are fully responsible for all activities that occur under your password or account with or without your knowledge. If you knowingly provide your login and password information to another person, your account privileges may be suspended temporarily or terminated. You agree to immediately notify FARE Patient Registry of any unauthorized use of your password or account or any other breach of security. FARE Patient Registry will not be liable for any loss or damage arising from your failure to comply with this section. Certain portions of the Website and information contained on the Website may be accessible only to registered users or to affiliates, service providers or other business partners of FARE Patient Registry, or may otherwise be password restricted. You agree not to (i) gain or attempt to gain unauthorized access to such portions of the Website or to information contained in such sections of the Website; (ii) obtain or attempt to obtain confidential, proprietary and/or personal information stored on the Website; (iii) distribute passwords to unregistered or unauthorized users; or (iv) make any unauthorized use of the Website or information accessible on the Website.

b. User Submitted Content. FARE Patient Registry is not in any way associated with or responsible for content, materials or information posted on,submitted to or transmitted to or through the Website by users ("User Submissions"). FARE Patient Registry has the right, but not the obligation, to monitor and verify content posted on or transmitted to the Website for any reason, and reserves the right to remove anything that is, in its sole discretion, unacceptable, inappropriate, or not in compliance with these Terms and Conditions; to disclose data to law enforcement agencies or authorities who may investigate reports of misuse or abuse of this Website; and to terminate any User's access to the Website at any time, without prior notice.

c. You acknowledge and agree that FARE Patient Registry is not required to edit or review any User Submissions. However, FARE Patient Registry reserves the right, in its sole discretion, to verify and correct any errors, inaccuracies, or omissions in any portion of the Website or content posted thereon or submitted or otherwise transmitted thereto, and all such content may be subject to FARE Patient Registry approval. FARE Patient Registry reserves the right, at any time, for any reason, to reject, suspend, cancel or remove content, and neither FARE Patient Registry, nor its employees, consultants or other agents will have any liability for taking such actions.
You further understand and acknowledge that you may be exposed to User Submissions that are inaccurate or otherwise objectionable, and you agree to waive and hereby do waive, any legal or equitable rights or remedies you have or may have against FARE Patient Registry with respect thereto, and agree to indemnify and hold FARE Patient Registry harmless to the fullest extent allowed by law regarding all matters related to your use of the Website, whether as a registered provider in submitting User Submissions and/or creating a profile, or as a representative of an institution using the Website for informational and educational purposes.

d. Users may report abuses of the Website to FARE Patient Registry Coordinator with sufficient detail identifying the abusive conduct or content, so that FARE Patient Registry may determine, in its sole discretion, whether to take action with respect to such alleged abuse.
e. You are solely responsible for and will exercise caution, discretion, common sense and judgment in using and accessing the Website and all content contained therein. You are solely responsible for any equipment necessary to access and use the Website.

f. You agree to cooperate fully with FARE Patient Registry to investigate any suspected or actual activity that is in breach of these Terms and Conditions.

g. Risk of Using the Website and the Internet. You assume total responsibility and risk for your use of the Website and the Internet. You acknowledge and agree that any uploads or transmission you make to, from or through the Website may be intercepted and used by an unauthorized third party and that all of the risk associated with these activities is solely yours.

h. Links to Other Websites. The Website may contain links to other Websites that are not under the control of FARE Patient Registry. FARE Patient Registry is not responsible for the contents of any linked Website or any link contained in a linked Website, or any changes or updates to such Websites. The inclusion of any link does not imply endorsement by FARE Patient Registry. It is up to you to take precautions to ensure that whatever you select for your use is free of viruses, worms, Trojan horses, and other items of a destructive nature.

6. Information Contained on Website

You understand that all information publicly posted or privately transmitted through the Website is the sole responsibility of the person from which such content originated and that FARE Patient Registry will not be liable for any errors or omissions in any content. You understand that FARE Patient Registry cannot guarantee the identity of any other users with whom you may interact in the course of using the Website or Services. Additionally, we cannot guarantee the authenticity of any data that users may provide about themselves.

7. Disclaimer of Medical Advice

You understand and acknowledge that all users are responsible for their own medical care, treatment, and oversight. All of the Content provided on the Website, including text, treatments, dosages, outcomes, charts, profiles, graphics, photographs, images, advice, messages, forum postings, are for informational purposes only and are not intended to be a substitute for independent professional medical judgment, advice, diagnosis, or treatment. The Content is not intended to establish a standard of care to be followed by a user of the Website. You understand and acknowledge that you should always seek the advice of your physician or other qualified health provider with any questions or concerns you may have regarding your health. You also understand and acknowledge that you should never disregard or delay seeking medical advice relating to treatment or standard of care because of information featured on or transmitted through the Website.

8. Disclaimer of Warranties

THE WEBSITE AND THE CONTENT MADE AVAILABLE ON THE WEBSITE ARE PROVIDED ON AN "AS IS" AND "AS AVAILABLE" BASIS. FARE PATIENT REGISTRY DOES NOT MAKE ANY EXPRESS OR IMPLIED WARRANTIES, REPRESENTATIONS OR ENDORSEMENTS WHATSOEVER (INCLUDING, BUT NOT LIMITED TO, WARRANTIES OF TITLE OR NON-INFRINGEMENT, OR THE IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE) WITH REGARD TO THE WEBSITE, THE CONTENT, ANY ADVICE OR SERVICES PROVIDED THROUGH THE WEBSITE OR ON THE INTERNET GENERALLY. SOME STATES MAY NOT PERMIT THE DISCLAIMER OF IMPLIED WARRANTIES, SO THE FOREGOING DISCLAIMER MAY NOT APPLY TO YOU. FARE PATIENT REGISTRY DOES NOT WARRANT THAT THE WEBSITE WILL BE UNINTERRUPTED OR ERROR-FREE OR THAT DEFECTS IN THE WEBSITE WILL BE CORRECTED, THAT ANY INFORMATION CONTAINED ON OR TRANSMITTED THROUGH THE WEBSITE IS COMPLETE, ACCURATE OR CURRENT, THAT USER OR OTHER INFORMATION WILL BE COMPLETELY SECURE FROM UNAUTHORIZED ACCESS OR DISCLOSURE, OR THAT ANY INFORMATION IS FREE OF VIRUSES OR OTHER ROGUE PROGRAMMING.

9. Limitation of Liability

UNDER NO CIRCUMSTANCES SHALL FARE PATIENT REGISTRY OR ANY OF ITS PARTNERS, CONTRIBUTORS, AGENTS, EMPLOYEES, OR ANY OTHER PARTY INVOLVED IN CREATING, PRODUCING, OR DISTRIBUTING THE WEBSITE OR PROVIDING CONTENT, ADVICE, PRODUCTS OR SERVICES THROUGH THE WEBSITE BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, OR CONSEQUENTIAL DAMAGES FOR LOSS OF PROFITS, GOODWILL, USE, DATA OR OTHER INTANGIBLE LOSSES (EVEN IF WE HAVE BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES) THAT RESULT FROM: (I) THE USE OF OR INABILITY TO USE THE WEBSITE; (II) ANY INACCURACIES, ERRORS, OMISSIONS, OR LACK OF AUTHENTICITY IN THE CONTENT; (III) USE OF THE CONTENT; (IV) THE COST OF PROCURING SUBSTITUTE MERCHANDISE, ADVICE AND SERVICES RESULTING FROM USE OF THE WEBSITE; (V) ANY LOSS, MISUSE, OR UNAUTHORIZED ACCESS TO OR ALTERATION OF INFORMATION OR MATERIALS TRANSMITTED TO OR CONTAINED ON THE WEBSITE; (VI) STATEMENTS, ADVICE, WARRANTIES, GUARANTEES OR CONDUCT OF FARE PATIENT REGISTRY OR ANY THIRD PARTY ON THE WEBSITE, OR (VII) ANY OTHER MATTER RELATING TO THE USE OF THE WEBSITE. YOU HEREBY ACKNOWLEDGE THAT THIS PARAGRAPH SHALL APPLY TO ALL CONTENT, ADVICE, MERCHANDISE, AND SERVICES AVAILABLE THROUGH THE WEBSITE. BECAUSE SOME STATES MAY NOT ALLOW THE EXCLUSION OR LIMITATION OF LIABILITY FOR CONSEQUENTIAL OR INCIDENTAL DAMAGES, IN SUCH STATES LIABILITY IS LIMITED TO THE LEAST AMOUNT PERMITTED BY LAW. THE LIMITATIONS OF LIABILITY PROVIDED IN THIS AGREEMENT INURE TO THE BENEFIT OF FARE PATIENT REGISTRY AND ITS RESPECTIVE AFFILIATES, PARTNERS, CONTRIBUTORS, OFFICERS, DIRECTORS, EMPLOYEES, ASSIGNS, ATTORNEYS AND AGENTS.

10. Indemnification

You agree to indemnify and otherwise hold harmless FARE Patient Registry, its officers, employees, agents, subsidiaries, affiliates and other partners from any and all liability, including any and all direct, indirect, incidental, special, consequential or exemplary damages, and any and all costs and/or expenses (including reasonable attorneys' fees) resulting from (i) your use of the Website, including, but not limited to, your access to or distribution of information from the Website; (ii) any misuse, unauthorized access to, disclosure, alteration, or destruction of the Website, information contained in the Website, and/or your communications with or through the Website, or (iii) any other matter relating to the Website. You understand and agree that FARE Patient Registry may disclose information provided if in its good faith belief such disclosure is required by applicable law.

11. Copyright and Copyright Agent

The Website and the compilation (meaning selection, composition, and arrangement) of all of the content on the Website are the exclusive property of FARE Patient Registry and protected by U.S. and international copyright law. FARE Patient Registry reserves the right to remove any content, from any source, at any time, for any reason (including, but not limited to, claims or allegations made by third parties relating to such content). Users of the Website agree to not take any action with respect to content of the Website that would violate the intellectual property rights of FARE Patient Registry or the individual rights of other users. Content contained on the Website may not be modified, copied, distributed, framed, republished, downloaded, displayed, or sold in any form or by any means, in whole or in part, without the prior written consent of FARE Patient Registry or, in the case of user-submitted content, any other appropriate party or parties.

FARE Patient Registry respects the intellectual property of others and asks that users do the same. If a user or any other party feels that its work has been copied in a way that constitutes copyright infringement, that person should provide FARE Patient Registry with the following information:

1. A physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed;

2. Identification of the copyrighted work claimed to have been infringed, or, if multiple copyrighted works at a single online Website are covered by a single notification, a representative list of such works at that Website;

3. Identification of the material that is claimed to be infringing or to be the subject of infringing activity and that is to be removed or access to which is to be disabled, and information reasonably sufficient to permit the service provider to locate the material;

4. Information reasonably sufficient to permit the service provider to contact the complaining party, such as an address, telephone number, and, if available, an electronic mail address at which the complaining party may be contacted;

5. A statement that the complaining party has a good faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law;

6. 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.

Users may contact FARE Patient Registry for notice of claims of infringement on this Website as follows:
By email: This email address is being protected from spambots. You need JavaScript enabled to view it.

12. Trademarks

The names FARE Patient Registry, and the FARE Patient Registry logo, and other FARE Patient Registry logos and names are trademarks of FARE Patient Registry. You agree not to display or use these trademarks in any manner without FARE Patient Registry's prior, written permission. The section titles of these Terms and Conditions are displayed for convenience only and have no legal effect. If any provision of these Terms and Conditions are to be unenforceable for any reason, the remaining provisions will be unaffected and remain in full force and effect.

13. International Users

FARE Patient Registry makes no claims that information on the FARE Patient Registry is appropriate or may be downloaded outside of the United States. Access to the Website may not be legal in certain countries or for certain persons. If you access the FARE Patient Registry from outside of the United States, you do so at your own risk and are responsible for compliance with the laws of your jurisdiction regarding online conduct and acceptable content. User personal information ("Information") that is submitted to this FARE Patient Registry will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law and our Privacy Policy. If you do not consent to the foregoing limitations on use, you may not use the FARE Patient Registry.

14. General Practices Regarding Use and Storage.

You agree that FARE Patient Registry has no responsibility or liability for the deletion or failure to store any messages and other communications or other Content maintained or transmitted by the Website. You acknowledge that FARE Patient Registry reserves the right to log off accounts that are inactive for an extended period of time. You further acknowledge that FARE Patient Registry reserves the right to modify these general practices and limits from time to time.

15. Privacy

You agree that you have read and understand the terms of the Privacy Policy. This policy governs the collection, use and sharing of personal and non-personal information from you when using the Website.

16. Termination

You agree that FARE Patient Registry may, with or without cause, immediately terminate your account and access to the Website or the Services without prior notice. Without limiting the foregoing, the following will lead to a termination by FARE Patient Registry of a user's use of the Website or the Services (a) breaches or violations of these Terms and Conditions or other incorporated agreements or guidelines, (b) requests by law enforcement or other government agencies, (c) a request by you (self-initiated account deletions), (d) unexpected technical issues or problems, and (e) extended periods of inactivity. You agree that all terminations shall be made in FARE Patient Registry's sole discretion and that FARE Patient Registry shall not be liable to you or any third-party for any termination of your account or access to the Website or the Services.

17. Communications from FARE Patient Registry

From time to time, FARE Patient Registry or other related entities will notify users of updates and other valuable information about FARE Patient Registry, the FARE Patient Registry and related clinical and research information (see our Privacy Policy to learn more about communications). By using the FARE Patient Registry, or registering or subscribing for services provided on or through the FARE Patient Registry, users consent to being contacted by FARE Patient Registry and related entities, and to receiving such updates and information. Users acknowledge and agree that users must always accept email transmissions from FARE Patient Registry, in order, to continue to use the FARE Patient Registry or the Services.

18. Governing Law

Any disputes arising out of the use of the Website or the Services or these Terms and Conditions will be governed by the law of the State of California, regardless of conflict of law principles. Sole and exclusive jurisdiction and venue over any dispute arising out of or relating to these Terms and Conditions shall lie in the appropriate federal or state court in California.

19. Statute of Limitations

Any cause of action you may have with respect to use of the Website must be commenced within one (1) year after the claim or cause of action arises.

20. Contacting the FARE Patient Registry Coordinator

If you have any medical, research, treatment or patient referral questions, contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.

This email address is being protected from spambots. You need JavaScript enabled to view it.">
If you have questions about the FARE Patient Registry, or to report violations of these Terms and Conditions, please email the Registry Coordinator at: This email address is being protected from spambots. You need JavaScript enabled to view it.