GLOBAL GENES TERMS OF USE

These terms of use (the “Terms”) are a legal contract between you (“you” and “your”) and Global Genes (“Global Genes,” “RARE-X”, “we,” “us,” or “our”) and govern your access to, and use of, the Global Genes’ public facing website located at globalgenes.org, and your registration for and participation in and access to any of the RARE-X data collection program websites located at https://dcp2.rare-x.org (collectively, the “Sites”) and associated URLs of our service providers and the Content (as defined below in Section 2).

BY ACCESSING AND/OR USING THE SITE(S) AND REGISTERING TO BE PART OF THE RARE-X DATA COLLECTION PROGRAM, YOU ACKNOWLEDGE THAT YOU HAVE READ, UNDERSTAND, AND AGREE TO BE BOUND BY THESE TERMS. IF YOU ARE ACCESSING GLOBAL GENES ON BEHALF OF A COMPANY, COMMUNITY, GROUP OR OTHER ENTITY, THE “YOU” INCLUDES YOU AND THAT ENTITY AND YOU REPRESENT AND WARRANT THAT YOU ARE AN AUTHORIZED REPRESENTATIVE OF THE ENTITY WITH THE AUTHORITY TO BIND TO THESE TERMS OF USE, AND YOU AGREE TO THESE TERMS ON THE ENTITY’S BEHALF. IF YOU DO NOT AGREE WITH ANY OF THESE TERMS, DO NOT ACCESS OR OTHERWISE USE THE SITE OR ANY INFORMATION CONTAINED ON THE SITE.

CHANGES TO THE SITE AND CONTENT; MODIFICATION OF THESE TERMS

GLOBAL GENES MAY MAKE CHANGES TO, AND/OR DISCONTINUE OR SUSPEND ACCESS TO THE SITE’S CONTENT AT ANY TIME WITHOUT NOTICE. YOU AGREE THAT GLOBAL GENES WILL NOT BE LIABLE TO YOU OR TO ANY THIRD PARTY FOR ANY CHANGES, SUSPENSION OR DISCONTINUANCE OF THE SITES, AND/OR CONTENT (OR ANY PART THEREOF).

GLOBAL GENES RESERVES THE RIGHT TO CHANGE OR MODIFY THESE TERMS AT ANY TIME. IF GLOBAL GENES MAKES ANY SUCH CHANGES, GLOBAL GENES WILL POST UPDATED TERMS OF USE ON THIS SITE. IF WE MAKE ANY MATERIAL CHANGES TO THESE TERMS, WE WILL NOTIFY YOU BY POSTING A NOTICE OF THE CHANGES ON THE SITE. IT IS YOUR RESPONSIBILITY TO REGULARLY VISIT AND REVIEW THESE TERMS. IF ANY MODIFICATION IS UNACCEPTABLE TO YOU, YOUR SOLE REMEDY SHALL BE TO CEASE USING THE SITE. IF YOU DO NOT CEASE USING THE SITE(S) AND/OR CONTENT FOLLOWING THE DATE WE POST THE UPDATED TERMS, YOU WILL BE DEEMED TO HAVE ACCEPTED THE CHANGE. NOTE THAT, ANY MODIFICATIONS TO THESE TERMS WILL NOT ACT TO MODIFY EITHER: THE PRIVACY POLICIES REFERRED TO IN SECTION 8 BELOW; OR THE TERMS OF ANY CONSENT FORMS THAT YOU AGREE TO IF YOU DECIDE TO PARTICIPATE IN ANY RARE-X DATA COLLECTION PROGRAMS.

ACCESS AND USE OF SITE AND CONTENT

Subject to your compliance with these Terms, Global Genes grants you a limited, revocable, nonexclusive right to access and use the Sites and the Content (as defined below) solely for your own internal use. In addition, if you are registered as a patient advocacy group, Global Genes may provide you with dashboard access to certain Content graphics that summarize aggregated information related to specific disease populations (“Cohort Graphics”).  In such case, Global Genes grants the applicable patient advocacy group a limited, revocable, nonexclusive right to reproduce and distribute such Cohort Graphics for the purpose of engaging in advocacy work on behalf of the applicable disease population, provided that you do not modify the Cohort Graphics or remove, change or obscure any copyright, trademark, service mark or other proprietary rights notices incorporated in the Cohort Graphics.

Global Genes and its licensors retain all right, title and interest in and to the Sites, including, without limitation, any and all text, graphics, images, music, software, audio, video, works of authorship of any kind, and information or other materials that are posted, generated, provided or otherwise made available through the Site (collectively, the “Content”). All Global Genes trademarks are strictly owned by Global Genes, and nothing in these Terms will be construed to transfer ownership rights or grant any permission, license or other rights to any Global Genes trademark without written authorization from Global Genes. The names of actual companies and products mentioned within the Sites and/or Content may be the trademarks of their respective owners. Global Genes reserves all rights and licenses not expressly granted to you in these Terms and no implied license is granted by Global Genes. The Sites and its underlying technology are protected by copyright, trademark, patent, intellectual property, and other laws of the United States and foreign countries. You agree not to remove, change or obscure any copyright, trademark, service mark or other proprietary rights notices incorporated in or accompanying the Sites and/or any Content.

PROHIBITED USE

As a condition of your use of the Sites and Content, you warrant to Global Genes that you will not use the Sites, the Tool and/or Content for any purpose that is unlawful or prohibited by these Terms. Specifically, You are not allowed to (directly or indirectly): (a) resell or otherwise make commercial use of the Site, the Tool and/or Content; (b) collect or use any images, descriptions, or other content included in the Site, the Tool and/or Content, or any portion thereof; (c) copy, imitate, distribute, publicly perform, or publicly display Site, the Tool and/or Content; (d) modify or otherwise make any derivative uses of the Site, the Tool and/or Content, or any portion thereof; (e) use data mining, robots or similar data gathering or extraction methods on the Site; (f) perform, or release or disclose the results of, any benchmark testing or vulnerability assessments of the Site; (g) introduce into the Site any viruses, Trojan horses, malware, spyware, adware or other disruptive software, or any software code, which is designed to disrupt, damage, or perform unauthorized actions on a computer system; (h) remove or alter any proprietary notices or labels on or in the Site, the Tool and/or Content; (i) use the Site, the Tool and/or Content to directly or indirectly  develop any product  or  service that  competes with the Site; (j) download (other than page caching) any portion of the Site, the Tool and/or Content or any information contained therein, except as expressly permitted on the Site; or (k) use the Site, the Tool and/or Content other than as expressly permitted in these Terms. 

You may not use the Site, the Tool and/or Content in any manner that would violate any applicable laws, rules or regulations, or, which could damage, disable, overburden, or impair the Site or interfere with any other party’s use and enjoyment of the Site, the Tool and/or Content. You may not obtain or attempt to obtain any materials or information through any means not intentionally made available or provided for through the Site, including, but not limited to, data mining, robots, or similar data gathering and extraction tools.

FEEDBACK

Global Genes shall be entitled to unrestricted use of any and all comments, suggestions, ideas, notes, drawings, concepts, problems or other information with respect to the Site, the Content or any Global Genes programs or services disclosed or offered by you to us (collectively,” Feedback”). We may use the Feedback for any and all purposes whatsoever, commercial or otherwise, without any payment or other obligation to you or any other person involved with the creation of the Feedback.

TERMINATION

Global Genes reserves the right, in its sole discretion, to terminate and/or suspend your access to the Site, the Tool and/or Content or any portion thereof at any time, for any reason, without notice.

GLOBAL GENES’ SERVICE PROVIDERS

Global Genes’ contracts with certain service providers to operate and host certain components of the Sites. As further described in the RARE-X Data Collection Program Privacy Policy , such service providers are contractually obligated to only use your personal information to provide service to Global Genes with respect to the operation of the Site and for no other purpose. In one or more cases, such service providers may present separate terms of use (“Service Provider Terms of Use”) with respect to their specific services and their liability for those services. Unlike the third parties who operate Linked Sites (as described below), such service providers are acting as contractors to Global Genes and the applicable Service Provider Terms of Use are in addition to these Terms.

LINKS TO THIRD PARTY SITES

The Site contains links to other third-party websites which are not controlled or owned by Global Genes (“Linked Site”) and who are not service providers to Global Genes. If you decide to access and use such Linked Site, be advised that your use is governed solely by the terms and conditions of such Linked Site, and Global Genes does not endorse, is not responsible for, and make no representations as to such Linked Site, their content or the manner in which they handle your data. Global Genes is not liable for any damage or loss caused or alleged to be caused by or in connection with your access or use of any such Linked Site, or your reliance on the privacy practices of other policies of such Linked Site. 

AVAILABILITY OF THE SITE

Global Genes makes no claims regarding the availability or right to access or use of the Site, the Tool and/or Content. Global Genes may restrict access to the Site, the Tool and/or Content, or portions thereof, in certain countries in its sole discretion, and the Site the Tool and/or Content may not be available or accessible in all languages. If you use or access the Site, the Tool and/or Content outside of the United States, you are responsible for compliance with the laws and regulations of your jurisdiction with respect to your use of the Site, the Tool and/or Content in your country of residence.

PRIVACY AND PERSONAL INFORMATION

For information about Global Genes data protection practices, please read Global Genes’ General Privacy Policy, which applies to all users of the GlobalGenes.org website and the RARE-X Data Collection Program Privacy Policy, which applies specifically to users who register to participate in research. These policies explain how Global Genes treats your personal information and protects your privacy when you provide personally identifiable information to Global Genes in connection with your use of the Sites and any patient data collection program. In the event of a conflict between these Terms and either privacy policy or the terms of a patient data collection consent form that you have agreed to, the terms of the applicable privacy policy or patient data collection program consent form will control.

DISCLAIMER

THE SITES AND CONTENT (AND ANY PART THEREOF), AND ANY OTHER MATERIALS OR INFORMATION MADE AVAILABLE THROUGH THE SITES, ARE PROVIDED “AS IS” AND “AS AVAILABLE”. GLOBAL GENES AND ITS LICENSORS AND SUPPLIERS HEREBY EXPRESSLY DISCLAIM ANY REPRESENTATIONS, WARRANTIES OR GUARANTEES OF ANY KIND, EXPRESS OR IMPLIED, INCLUDING WARRANTIES OF MERCHANTABILITY, FITNESS FOR ANY PARTICULAR PURPOSE, SATISFACTORY PURPOSE, ACCURACY, OR NON-INFRINGEMENT.

GLOBAL GENES AND ITS LICENSORS AND SUPPLIERS DO NOT WARRANT OR MAKE ANY GUARANTEE THAT SITE, THE TOOL AND/OR CONTENT (OR ANY PART THEREOF), OR ANY OTHER MATERIALS OR INFORMATION MADE AVAILABLE THROUGH THE SITE: (I) WILL MEET YOUR REQUIREMENTS; (II) WILL BE COMPATIBLE WITH YOUR NETWORK, COMPUTER OR MOBILE DEVICE, OR ANY THIRD-PARTY SITE; (III) WILL BE AVAILABLE ON AN UNINTERRUPTED, TIMELY, SECURE OR ERROR-FREE BASIS; OR (IV) WILL BE ACCURATE OR RELIABLE. NO ADVICE OR INFORMATION, WHETHER ORAL OR WRITTEN OBTAINED BY YOU FROM RARE-X OR ANY THIRD PARTY SHALL CREATE ANY WARRANTY.

GLOBAL GENES DOES NOT WARRANT, ENDORSE, GUARANTEE OR ASSUME RESPONSIBILITY FOR ANY LINKED SITE, ADVERTISED OR ACCESSIBLE THROUGH THE SITE THE TOOL AND/OR CONTENT, AND RARE-X WILL NOT BE A PARTY TO, OR IN ANY WAY MONITOR, ANY TRANSACTION BETWEEN YOU AND THE THIRD-PARTY OPERATORS OF SUCH LINKED SITE.

IF YOU ARE DISSATISFIED WITH ANY PORTION OF THE SITE, THE TOOL AND/OR CONTENT, YOUR SOLE AND EXCLUSIVE REMEDY IS TO DISCONTINUE USING THE SITE.

LIMITATION OF LIABILITY

TO THE MAXIMUM EXTENT PERMITTED BY APPLICABLE LAW, IN NO EVENT SHALL GLOBAL GENES BE LIABLE FOR ANY INDIRECT, PUNITIVE, INCIDENTAL, SPECIAL, CONSEQUENTIAL DAMAGES OR ANY DAMAGES WHATSOEVER, OR FOR ANY DAMAGES FOR LOSS OF USE, DATA, OR PROFITS, ARISING OUT OF OR IN ANY WAY CONNECTED WITH THE USE OR PERFORMANCE OF THE SITE THE TOOL AND/OR CONTENT, WITH THE DELAY OR INABILITY TO USE THE SITE THE TOOL AND/OR CONTENT, OR FOR ANY INFORMATION OBTAINED THROUGH THE SITE THE TOOL AND/OR CONTENT, OR OTHERWISE ARISING OUT OF THE USE OF THE SITE THE TOOL AND/OR CONTENT, WHETHER BASED ON CONTRACT, TORT, NEGLIGENCE, STRICT LIABILITY OR OTHERWISE, EVEN IF GLOBAL GENES HAS BEEN ADVISED OF THE POSSIBILITY OF DAMAGES. IN NO EVENT SHALL GLOBAL GENES’ TOTAL CUMULATIVE LIABILITY ARISING FROM OR RELATED TO THESE TERMS OR THE ACCESS, USE OF, OR INABILITY TO ACCESS OR USE THE SITE, THE TOOL AND/OR CONTENT (OR ANY PART THEREOF), AND/OR ANY OR ANY OTHER MATERIALS OR INFORMATION MADE AVAILABLE THROUGH THE SITE, EXCEED ONE HUNDRED DOLLARS ($100.00). GLOBAL GENES DISCLAIMS ALL LIABILITY OF ANY KIND OF GLOBAL GENES’ LICENSORS AND SUPPLIERS.

APPLICATION OF DISCLAIMERS AND LIMITATIONS

BECAUSE SOME STATES/JURISDICTIONS DO NOT ALLOW THE DISCLAIMERS OF CERTAIN WARRANTIES AND/OR THE EXCLUSION OR LIMITATION OF LIABILITY FOR CONSEQUENTIAL, SPECIAL, INCIDENTAL OR OTHER DAMAGES, THE DISCLAIMERS AND LIMITATIONS SET FORTH IN SECTIONS 9 AND 10 MAY NOT APPLY TO YOU, INCLUDING WITH RESPECT TO BREACH OF SECTION 8. IN SUCH EVENT, THE LIABILITY OF RARE-X FOR SUCH DAMAGES WILL BE LIMITED TO THE GREATEST EXTENT PERMITTED BY APPLICABLE LAW IN SUCH JURISDICTION.

INDEMNIFICATION

You agree that you are solely responsible for (and that Global Genes has no responsibility to you or to any third party for) any breach of your obligations under the Terms and for the consequences (including any loss or damage which Global Genes may suffer) of any such breach.  Except as prohibited by law, you will hold Global Genes and its officers, directors, employees and agents harmless for any indirect, punitive, special, incidental or consequential damage, however it arises (including attorneys’ fees and all related costs and expenses of litigation and arbitration, or at trial or on appeal, if any, whether or not litigation or arbitration is instituted), whether  in an action of  contract, negligence or other tortious action, or arising out of or in connection with these Terms, including without limitation any claim for personal injury or property damage, arising from (i) your use of and access to the Site, the Tool and/or Content; and (ii) your violation of any of these Terms. We reserve the right to assume control of the defense of any third-party claim that is subject to indemnification by you, in which event you will cooperate with us in asserting any available defenses. This defense and indemnification obligation will survive these Terms and your use of the Services.

GOVERNING LAW AND DISPUTES

Governing Law. These Terms will be governed by the laws of the State of California, United States of America without giving effect to any conflict of laws principles.

Disputes. Except as otherwise set forth in these Terms, you agree that any dispute between you and Global Genes arising out of or relating to these Terms or the Site, the Tool and/or Content (or any part thereof) (collectively, “Disputes”) shall be governed by the provisions set forth in this Section.

Informal Resolution. Before resorting to formal dispute resolution in accordance with this Section, you agree to first contact us directly at [email protected] to seek an informal resolution to any Dispute. In the event a Dispute is not resolved within thirty (30) days after submission, you or Global Genes may institute arbitration in accordance with the procedures set forth in this Section.

Dispute Resolution. Any and all Disputes that cannot be resolved through informal resolution as set forth above shall be resolved exclusively through the state or federal courts in Los Angeles California unless otherwise mutually agreed to by the parties.

Alternatively, we may agree to use the JAMS Virtual Mediation & Arbitration services to resolve disputes remotely, by telephone, online and/or be solely based on written submissions and any judgment on the award rendered by the arbitrator shall be binding, final, and confidential, and may be entered in any court of competent jurisdiction.

GENERAL

Entire Agreement

The Terms constitute the entire agreement between you and Global Genes, and supersedes all prior oral or written agreements or communications with regard to the subject matter described herein.  Neither the rights nor the obligations arising under these Terms are assignable by you, and any such attempted assignment or transfer shall be void without effect.  The official text of these Terms (and any notice submitted hereunder) will be in English. The parties acknowledge that they require that these Terms be drawn up in the English language only. In the event of any dispute concerning the construction or meaning of these Terms, reference will be made only to these Terms as written in English and not to any translation into another language.

Waiver

You agree that if Global Genes does not exercise or enforce any legal right or remedy which is contained in the Terms (or which Global Genes has the benefit of under any applicable law), this will not be taken to be a formal waiver of Global Genes’ rights and that those rights or remedies will still be available to Global Genes. No waiver by either party of any breach of any provision hereof shall be deemed a waiver of any subsequent or prior breach of the same or any other provision.

Severability.

If any court of law, having the jurisdiction to decide on this matter, rules that any provision of these Terms is invalid, then that provision will be removed from the Terms without affecting the rest of the Terms, which will remain in full force and effect.

QUESTIONS

If you have any questions regarding these Terms, please send an email to

[email protected].