Terms of Use

Last Modified: October 5, 2016

1. Acceptance of the Terms of Use

The Rare Cancer Research Foundation (“Company”, “we” or “us”), a North Carolina-based 501(c)3 non-profit organization, maintains the website www.pattern.org, including any content, functionality and services offered on or through www.pattern.org or any other website or webpage operated by the Company (the “Website”). The following terms and conditions (“Terms of Use”) govern your access to and use of the Website, whether as a guest or a registered user.

Please read the Terms of Use carefully before you start to use the Website. By using the Website, or by clicking to accept or agree to the Terms of Use when this option is made available to you, you accept and agree to be bound and abide by these Terms of Use. If you do not want to agree to these Terms of Use, you must not access or use the Website.

This Website is offered and available to users aged 18 and older and who are residents of the United States. If you are agreeing to be bound by this Agreement on behalf of your employer or another entity, you must have the full legal authority to bind your employer or such entity to this Agreement. If you are aged 17 or younger (or otherwise have not attained the age of majority in your state of residence), you agree that your parent or guardian has reviewed these Terms of Use carefully, has agreed to be bound by these Terms of Use, and will access and use this Website on your behalf. By using the Website, you represent and warrant that you meet all of the foregoing eligibility requirements. If you do not meet all of these requirements, you must not access or use the Website.

2. Changes to the Terms of Use

We may revise and update these Terms of Use from time to time in our sole discretion. Changes are effective immediately when we post them, but are not retroactive. Your continued use of the Website following the posting of revised Terms of Use means that you accept and agree to the changes. You must check this page frequently so that you are aware of any changes, and immediately discontinue access or use of the Website if you do not want to agree to the revised Terms of Use.

3. Acceptance of Privacy Policy

All information we collect on the Website is subject to our Privacy Policy. By using the Website, or by clicking to accept or agree to the Terms of Use when this option is made available to you, you accept and agree to be bound and abide by our Privacy Policy. If you do not want to agree to our Privacy Policy, you must not provide us any personal information.

Our Website is hosted in the United States and our services are provided from the United States. It is possible that certain information will be stored on servers in multiple other countries on the "cloud" or other similar distributed hosting platforms. We provide this Website for use only by persons located in the United States. If, nevertheless, you are a user accessing our Website or services from the European Union or any other region with laws governing personal data collection, use, and disclosure that differ from United States laws, you are expressly and knowingly consenting to the transfer of your personal information to the United States and other jurisdictions as indicated above, and to our use of your personal information in accordance with our Privacy Policy.

4. Facilitating Connections to Researchers Only; Exclusion of Related Warranties

The Website is designed to facilitate connections between, on the one hand, individuals who wish to contribute their personal health information and tissue samples for research purposes and, on the other hand, researchers that need such information and samples to conduct their research studies and programs. Except as provided below, we do not take part in the interactions or transactions between research subjects and researchers. We are not responsible for such interactions. You are solely responsible for such interactions. The decision to enroll in any particular research study or program and to execute any particular informed consent (if applicable) is entirely yours, and we are not a party to any relationship or contract or informed consent between you and any researcher. Your relationship with such researcher is governed solely by the terms of conditions of such informed consent or other written agreement between you and such researcher.

You specifically acknowledge and agree that:

  • You are not being granted the option to choose from among a list of researchers as to which researcher we will send your personal health information and (if applicable) tissue samples; we will, in our sole discretion, match you with one or more researchers and then present you with the option to either (A) move forward with contributing your personal health information and (if applicable) tissue samples to such researcher(s), or (B) choose not to participate; and

  • If you choose to provide any tissue samples, such tissue samples will be handled and delivered to the applicable researcher by third party professional delivery/logistics/courier services (“Delivery Services”), and we are not in any way involved with such shipping and handling.

We will, at our sole discretion, (i) match you with one or more researchers that can benefit from access to your personal health information and (if applicable) tissue samples, (ii) facilitate your formation of a relationship with such researcher(s), including by facilitating, through the Website or otherwise, a researcher’s presentation of information to you about the researcher’s research program or study and by facilitating your execution of and delivery to such researcher an informed consent or other authorization, and (iii) select a Delivery Service that is experienced with and has the capability to deliver tissue samples that are viable for research purposes. Otherwise, we cannot and do not control, we do not make any guarantees, we are not responsible for, and we make no representations or warranties regarding (A) whether any particular research study or program will be beneficial to you or to others, (B) whether you will receive any clinically-actionable information as a result of participating in any particular research study or program, (C) whether any particular research study or program will be conducted without error or yield any particular or useful results, or (D) whether any tissue samples you provide will be delivered by the Delivery Service into the hands of the applicable researcher safely, in a timely manner, and in a form that is free of defects, unspoiled, and useful to researchers.

NEITHER THE COMPANY NOR ANY PERSON ASSOCIATED WITH THE COMPANY MAKES ANY WARRANTY OR REPRESENTATION, AND THE COMPANY HEREBY DISCLAIMS ALL WARRANTIES OF ANY KIND, WHETHER EXPRESS OR IMPLIED, STATUTORY OR OTHERWISE, WITH RESPECT TO THE MATTERS DESCRIBED IN ITEMS (A) THROUGH (D) OF THE IMMEDIATELY PRECEDING PARAGRAPH. IN NO EVENT WILL THE COMPANY, ITS AFFILIATES OR THEIR SERVICE PROVIDERS, LICENSORS, EMPLOYEES, AGENTS, OFFICERS OR DIRECTORS BE LIABLE FOR ANY CLAIMS, DEMANDS, DAMAGES (ACTUAL OR CONSEQUENTIAL) OF ANY KIND AND NATURE, KNOWN AND UNKNOWN, SUSPECTED AND UNSUSPECTED, DISCLOSED AND UNDISCLOSED, ARISING OUT OF OR IN ANY WAY CONNECTED WITH (1) THE FAILURE OF ANY TISSUE SAMPLES YOU PROVIDE TO BE SUCCESSFULLY DELIVERED TO THE APPLICABLE RESEARCHER, OR (2) ANY DEALING AND/OR ANY DISPUTE BETWEEN SUBJECTS AND DELIVERY SERVICES OR BETWEEN SUBJECTS AND RESEARCHERS.

THE FOREGOING DOES NOT AFFECT ANY WARRANTIES OR LIABILITYWHICH CANNOT BE EXCLUDED OR LIMITED UNDER APPLICABLE LAW.

5. Accessing the Website and Account Security.

We reserve the right to withdraw or amend this Website, and any service or material we provide on the Website, in our sole discretion and without notice. We will not be liable if for any reason all or any part of the Website is unavailable at any time or for any period. From time to time, we may restrict access to some parts of the Website, or the entire Website, to users, including registered users.

You are responsible for making all arrangements necessary for you to have access to the Website. To access the Website or some of the resources it offers, you may be asked to provide certain registration details or other information. You must provide information that is correct, current and complete. You agree that all information you provide to register with this Website or otherwise, including but not limited to through the use of any interactive features on the Website, is governed by our Privacy Policy, and you consent to all actions we take with respect to your information consistent with our Privacy Policy.

If you choose, or are provided with, a user name, password or any other piece of information as part of our security procedures, you must treat such information as confidential, and you must not disclose it to any other person or entity. You also acknowledge that your account is personal to you and agree not to provide any other person with access to the Website or portions of it using your user name, password or other security information. If you permit any other person to use your account, you will be responsible for their activities while using the Website. You agree to notify us immediately of any unauthorized access to or use of your user name or password or any other breach of security. You also agree to ensure that you exit from your account at the end of each session. You should use particular caution when accessing your account from a public or shared computer so that others are not able to view or record your password or other personal information. We have the right to disable any user name, password or other identifier, whether chosen by you or provided by us, at any time in our sole discretion if, in our opinion, the continued use of that user name, password or other identifier would be inappropriate.

6. Intellectual Property Rights.

The Website and its entire contents, features and functionality (including but not limited to all information, software, text, displays, images, video and audio, and the design, selection and arrangement thereof) are owned by the Company, its licensors or other providers of such material and are protected by United States and international copyright, trademark, patent, trade secret and other intellectual property or proprietary rights laws. These Terms of Use permit you to use the Website for your personal, non-commercial use only.

Your computer may temporarily store copies of such materials incidental to your accessing and viewing those materials, and your Web browser may store files that are automatically cached for display enhancement purposes. You must not otherwise reproduce, distribute, modify, create derivative works of, publicly display, publicly perform, republish, download, store or transmit any of the material on our Website, except as follows:

  • You may print or download one copy of a reasonable number of pages of the Website for your own personal, non-commercial use and not for further reproduction, publication or distribution.

You must not modify copies of any materials from this Website nor use any illustrations, photographs, video or audio sequences or any graphics separately from the accompanying text. You must never delete or alter any copyright, trademark or other proprietary rights notices from copies of materials from the Website. Unless you are a researcher governed by a Researcher Participation Agreement in place between you and the Company, you must not access or use for any commercial purposes any part of the Website or any services or materials available through the Website. If you wish to make any use of material on the Website other than that set out in this section, please address your request to: requests@pattern.org.

If you print, copy, modify, download or otherwise use or provide any other person with access to any part of the Website in breach of the Terms of Use, your right to use the Website will cease immediately and you must, at our option, return or destroy any copies of the materials you have made. No right, title or interest in or to the Website or any content on the Website is being transferred to you, and all rights not expressly granted are reserved by the Company. Any use of the Website not expressly permitted by these Terms of Use is a breach of these Terms of Use and may violate copyright, trademark and other laws.

7. Trademarks.

The Company name, the terms “PATTERN.ORG” and “RARE CANCER RESEARCH FOUNDATION,” the stylized Pattern.org “hash-tag” logo and all related names, logos, product and service names, designs and slogans are trademarks of the Company or its affiliates or licensors. You must not use such marks without the prior written permission of the Company. All other names, logos, product and service names, designs and slogans on this Website are the trademarks of their respective owners.

8. Prohibited Uses.

You may use the Website only for lawful purposes and in accordance with these Terms of Use. You agree not to use the Website:

  • In any way that violates any applicable federal, state, local or international law or regulation (including, without limitation, any laws regarding the export of data or software to and from the US or other countries).

  • For the purpose of exploiting, harming or attempting to exploit or harm minors in any way by exposing them to inappropriate content, asking for personally identifiable information or otherwise.

  • To transmit any advertising or promotional material, including any “junk mail”, “chain letter” or “spam” or any other similar solicitation.

  • To impersonate or attempt to impersonate the Company, a Company employee, another user or any other person or entity.

  • To engage in any other conduct that restricts or inhibits anyone’s use or enjoyment of the Website, or that may harm the Company or users of the Website or expose them to liability.

Additionally, you agree not to use the Website in any manner that could disable, overburden, damage, or impair the site or interfere with any other party’s use of the Website, including their ability to engage in real time activities through the Website. Without limitation, you must not:

  • Use any robot, spider or other automatic device, process or means to access the Website for any purpose, including monitoring or copying any of the material on the Website.

  • Introduce any viruses, trojan horses, worms, logic bombs or other material that is malicious or technologically harmful or attack the Website via a denial-of-service attack or a distributed denial-of-service attack.

  • Attempt to gain unauthorized access to, interfere with, damage or disrupt any parts of the Website, the server on which the Website is stored, or any server, computer or database connected to the Website.

9. Monitoring and Enforcement; Termination.

We have the right to take any actions that we consider to be appropriate to ensure that the Website is operated in an appropriate manner. We may terminate or suspend your access to all or part of the Website for any reason that we determine to be adequate, including any violation of these Terms of Use.

Without limiting the foregoing, we have the right to fully cooperate with any law enforcement authorities or court order requesting or directing us to disclose the identity or other information of anyone posting any materials on or through the Website. YOU WAIVE ANY RIGHT TO ASSERT ANY CLAIMS RESULTING FROM ANY SUCH ACTION TAKEN BY THE COMPANY.

We do not undertake to review all material before it is posted on the Website, and cannot ensure prompt removal of objectionable material after it has been posted. Accordingly, we assume no liability for any action or inaction regarding transmissions, communications or content provided by any user or third party. We have no liability or responsibility to anyone for performance or nonperformance of the activities described in this section.

10. Reliance on Information Posted.

From time to time, we may post on our blog information about the results of recent research studies, about the efforts of providers, care-givers, researchers, our partner patient foundations or others engaged in patient communities to support patients and improve patient outcomes, or about other items that we believe may be of interest to our patient communities. This information presented on or through the Website is made available solely for general information purposes and is not intended to create a professional relationship with you of any sort. We do not warrant the accuracy, completeness or usefulness of this information, and any reliance you place on such information is strictly at your own risk. We disclaim all liability and responsibility arising from any reliance placed on such materials by you or any other visitor to the Website, or by anyone who may be informed of any of its contents.

The Website may include content provided by third parties, including materials provided by our partner researchers, our partner patient foundations, other bloggers and third-party licensors, syndicators, aggregators and/or reporting services. All statements and/or opinions expressed in these materials, and all articles and responses to questions and other content, other than the content provided by the Company, are solely the opinions and the responsibility of the person or entity providing those materials. These materials do not necessarily reflect the opinion of the Company. We are not responsible, or liable to you or any third party, for the content or accuracy of any materials provided by any third parties on or through the Website.

11. Changes to the Website.

We may update the content on the Website from time to time, but its content is not necessarily complete or up-to-date. Any of the material on the Website may be out of date at any given time, and we are under no obligation to update such material.

12. Links to Other Sites.

You may create a link from another site that you own to our homepage, provided you do so in a way that is fair and legal and does not damage our reputation or take advantage of it. You must not establish a link in such a way as to suggest any form of association, approval or endorsement on our part (unless we have expressly agreed to this in writing). Except as provided below (regarding social media features), you may not establish a link from any website that is not owned by you and you may not link to any part of the Website other than the homepage. We reserve the right to withdraw linking permission without notice.

If the Website contains links to other sites and resources provided by third parties, these links are provided for your convenience only. This includes links contained in advertisements, including banner advertisements and sponsored links. We have no control over the contents of those sites or resources, and accept no responsibility for them or for any loss or damage that may arise from your use of them. If you decide to access any of the third party websites linked to the Website, you do so entirely at your own risk and subject to the terms and conditions of use for such websites.

The Website may provide certain social media features that enable you to link from your own or certain third-party websites to certain content on the Website, send e-mails or other communications with certain content, or links to certain content, on the Website, or cause limited portions of content on the Website to be displayed or appear to be displayed on your own or certain third-party websites. You may use these features solely as they are provided by us and otherwise in accordance with any additional terms and conditions we provide with respect to such features. In addition to the limitations on linking set forth above, you may not cause the Website or portions of it to be displayed, or appear to be displayed by framing, deep linking or in-line linking on any other site.

13. Geographic Restrictions.

The owner of the Website is based in the state of North Carolina in the United States. We provide the Website for use only by persons located in the United States. We make no claims that the Website or any of its content is accessible or appropriate outside of the United States. Access to the Website may not be legal by certain persons or in certain countries. If you access the Website from outside the United States, you do so on your own initiative and are responsible for compliance with local laws.

14. Disclaimer of Warranties.

We cannot and do not guarantee or warrant that files available for downloading from the Internet or the Website will be free of viruses or other destructive code. You are responsible for implementing sufficient procedures and checkpoints to satisfy your particular requirements for anti-virus protection and accuracy of data input and output, and for maintaining a means external to our site for any reconstruction of any lost data. WE WILL NOT BE LIABLE FOR ANY LOSS OR DAMAGE CAUSED BY A DISTRIBUTED DENIAL-OF-SERVICE ATTACK, VIRUSES OR OTHER TECHNOLOGICALLY HARMFUL MATERIAL THAT MAY INFECT YOUR COMPUTER EQUIPMENT, COMPUTER PROGRAMS, DATA OR OTHER PROPRIETARY MATERIAL DUE TO YOUR USE OF THE WEBSITE OR ANY SERVICES OR ITEMS OBTAINED THROUGH THE WEBSITE OR TO YOUR DOWNLOADING OF ANY MATERIAL POSTED ON IT, OR ON ANY WEBSITE LINKED TO IT.

YOUR USE OF THE WEBSITE, ITS CONTENT AND ANY SERVICES OR ITEMS OBTAINED THROUGH THE WEBSITE IS AT YOUR OWN RISK. THE WEBSITE, ITS CONTENT AND ANY SERVICES OR ITEMS OBTAINED THROUGH THE WEBSITE ARE PROVIDED ON AN “AS IS” AND “AS AVAILABLE” BASIS, WITHOUT ANY WARRANTIES OF ANY KIND, EITHER EXPRESS OR IMPLIED. NEITHER THE COMPANY NOR ANY PERSON ASSOCIATED WITH THE COMPANY MAKES ANY WARRANTY OR REPRESENTATION WITH RESPECT TO THE COMPLETENESS, SECURITY, RELIABILITY, QUALITY, ACCURACY OR AVAILABILITY OF THE WEBSITE. WITHOUT LIMITING THE FOREGOING, NEITHER THE COMPANY NOR ANYONE ASSOCIATED WITH THE COMPANY REPRESENTS OR WARRANTS THAT THE WEBSITE, ITS CONTENT OR ANY SERVICES OR ITEMS OBTAINED THROUGH THE WEBSITE WILL BE ACCURATE, RELIABLE, ERROR-FREE OR UNINTERRUPTED, THAT DEFECTS WILL BE CORRECTED, THAT OUR SITE OR THE SERVER THAT MAKES IT AVAILABLE ARE FREE OF VIRUSES OR OTHER HARMFUL COMPONENTS OR THAT THE WEBSITE OR ANY SERVICES OR ITEMS OBTAINED THROUGH THE WEBSITE WILL OTHERWISE MEET YOUR NEEDS OR EXPECTATIONS.

THE COMPANY HEREBY DISCLAIMS ALL WARRANTIES OF ANY KIND, WHETHER EXPRESS OR IMPLIED, STATUTORY OR OTHERWISE, INCLUDING BUT NOT LIMITED TO ANY WARRANTIES OF MERCHANTABILITY, NON-INFRINGEMENT AND FITNESS FOR PARTICULAR PURPOSE. THE FOREGOING DOES NOT AFFECT ANY WARRANTIES WHICH CANNOT BE EXCLUDED OR LIMITED UNDER APPLICABLE LAW.

15. Limitation on Liability.

IN NO EVENT WILL THE COMPANY, ITS AFFILIATES OR THEIR LICENSORS, SERVICE PROVIDERS, EMPLOYEES, AGENTS, OFFICERS OR DIRECTORS BE LIABLE FOR DAMAGES OF ANY KIND, UNDER ANY LEGAL THEORY, ARISING OUT OF OR IN CONNECTION WITH YOUR USE, OR INABILITY TO USE, THE WEBSITE, ANY WEBSITES LINKED TO IT, ANY CONTENT ON THE WEBSITE OR SUCH OTHER WEBSITES OR ANY SERVICES OR ITEMS OBTAINED THROUGH THE WEBSITE OR SUCH OTHER WEBSITES. THIS DISCLAIMER INCLUDES ANY DIRECT, INDIRECT, SPECIAL, INCIDENTAL, CONSEQUENTIAL OR PUNITIVE DAMAGES, INCLUDING BUT NOT LIMITED TO, DAMAGES FOR PERSONAL INJURY, PAIN AND SUFFERING, EMOTIONAL DISTRESS, LOSS OF REVENUE, LOSS OF PROFITS, LOSS OF BUSINESS OR ANTICIPATED SAVINGS, LOSS OF USE, LOSS OF GOODWILL OR LOSS OF DATA, WHETHER CAUSED BY TORT (INCLUDING NEGLIGENCE), BREACH OF CONTRACT OR OTHERWISE, EVEN IF FORESEEABLE.

THE FOREGOING DOES NOT AFFECT ANY LIABILITY WHICH CANNOT BE EXCLUDED OR LIMITED UNDER APPLICABLE LAW.

16. Indemnification.

You agree to defend, indemnify and hold harmless the Company, its affiliates, licensors and service providers, and its and their respective officers, directors, employees, contractors, agents, licensors, suppliers, successors and assigns from and against any claims, liabilities, damages, judgments, awards, losses, costs, expenses or fees (including reasonable attorneys’ fees) arising out of or relating to your violation of these Terms of Use or your use of the Website, including, but not limited to, any use of the Website’s content, services and products other than as expressly authorized in these Terms of Use or your use of any information obtained from the Website.

17. Governing Law and Jurisdiction.

All matters relating to the Website and these Terms of Use and any dispute or claim arising therefrom or related thereto (in each case, including non-contractual disputes or claims), shall be governed by and construed in accordance with the internal laws of the State of North Carolina without giving effect to any choice or conflict of law provision or rule (whether of the State of North Carolina or any other jurisdiction).

Any legal suit, action or proceeding arising out of or related to these Terms of Use or the Website shall be instituted exclusively in the federal courts of the United States in North Carolina, or the courts of the State of North Carolina, except that we retain the right to bring any suit, action or proceeding against you for breach of these Terms of Use in your country of residence or any other relevant country. You waive any and all objections to the exercise of jurisdiction over you by such courts and to venue in such courts.

18. Limitation on Time to File Claims.

ANY CAUSE OF ACTION OR CLAIM YOU MAY HAVE ARISING OUT OF OR RELATING TO THESE TERMS OF USE OR THE WEBSITE MUST BE COMMENCED WITHIN ONE (1) YEAR AFTER THE CAUSE OF ACTION ACCRUES. OTHERWISE, SUCH CAUSE OF ACTION OR CLAIM IS PERMANENTLY BARRED.

19. Waiver and Severability.

No waiver by the Company of any term or condition set forth in these Terms of Use shall be deemed a further or continuing waiver of such term or condition or a waiver of any other term or condition, and any failure of the Company to assert a right or provision under these Terms of Use shall not constitute a waiver of such right or provision. If any provision of these Terms of Use is held by a court or other tribunal of competent jurisdiction to be invalid, illegal or unenforceable for any reason, such provision shall be eliminated or limited to the minimum extent such that the remaining provisions of the Terms of Use will continue in full force and effect.

20. Entire Agreement.

The Terms of Use and our Privacy Policy constitute the sole and entire agreement between you and The Rare Cancer Research Foundation with respect to the Website and supersede all prior and contemporaneous understandings, agreements, representations and warranties, both written and oral, with respect to the Website.

21. Your Comments and Concerns.

This website is operated by The Rare Cancer Research Foundation 703 Foster St, Durham NC 27701.

All feedback, comments, requests for technical support and other communications relating to the Website should be directed to: requests@pattern.org.