Terms and Conditions

Simons Searchlight Terms of Use

By using the Simons Searchlight web portal, you signify that you have read, understand and agree with these Terms of Use. We reserve the right to modify these terms at any time at our sole discretion without prior notice. All modifications to these Terms of Use will be posted on the web portal. We encourage you to review the web portal Terms of Use periodically for updates and changes. Your continued use of our web portal indicates your agreement with these modifications. If you do not agree with these Terms of Use, please do not provide us with any personal information and refrain from using our portal.

Use of the site and description of service

Simons Searchlight is an online community that supports families with rare genetic changes (also called “genomic variants”) associated with features of autism and developmental delay. We provide access to resources, information and family support. The purpose of the Simons Searchlight web portal is to allow individuals, families and medical and research providers to register certain information on the website’s registry database. The information provided by the registrant, during registration, is maintained in a secured database and will never be shared without the registrant’s express consent.

The Simons Searchlight web portal will include a number of features and functions, such as

• the ability to search for and read original and reproduced news articles and opinion pieces,
• the ability to view informational videos;
• the ability to participate in webinars;
• the ability to search for, read about and participate in human subjects research;
• the ability to match participants, based on the data they enter, with content, communities and studies;
• the ability to see aggregate data on communities of research participants;
• the ability to upload and organize related medical records; and
• the ability to document family history of medical conditions.

The Simons Searchlight web portal is not intended for anyone under the age of 18. You affirm that you are either 18 years of age or older, an emancipated minor, or possess legal parental or guardian consent; are fully able and competent to enter into the terms, conditions, obligations, affirmations, representations and warranties set forth in these Terms of Use; are otherwise capable of forming legally binding agreements under applicable law; and agree to abide by and comply with these Terms of Use.

Use and access to the web portal is made available to you solely for your personal, noncommercial use. You may make one copy of any part of the web portal in any medium to use for your personal, noncommercial use, but you must obtain our prior consent to make additional copies, to distribute such additional copies or to publicly display any of the information provided on the web portal. In addition, your continued use of the web portal is conditioned upon your compliance with these Terms of Use.

You understand that by using the site, you may be exposed to content that may include technical, typographical, scientific or photographic errors or that may be offensive, indecent or objectionable. If you find any inaccurate, out-of-date or incomplete information or content on this website, or if you suspect that any content posted on this site is an infringement of another’s intellectual property rights or is otherwise unlawful, please let us know immediately by contacting coordinator@simonssearchlight.org. We will take reasonable measures to review and investigate all inquiries, and we reserve the right to take any action (or to refrain from action) as we deem appropriate under the circumstances.

Simons Searchlight is dedicated to advancing the science of genetic changes related to autism. We are a partnership of leading scientists, researchers, and families. We believe the only way to make meaningful advances is to do it together. At the same time, we recognize that multiple organizations may exist to support a single genetic condition. These organizations may have official nonprofit status or may simply be a community of families who have connected through social media. Simons Searchlight values and encourages collaboration, transparency and open information sharing among interested parties and prioritizes working with groups who share these same values. We work as a neutral party with organizations and aim to provide inclusive information, resources and research opportunities to the entire community.

 

All content produced by Simons Searchlight is owned and managed by the Simons Foundation. If we suspect that an individual or organization is working in bad faith or at counter purposes to the mission of Simons Searchlight, we reserve the right to request removal of Simons Searchlight content from the individual’s or organization’s website and social media feeds.

Not medical advice

The content contained on this site and any communications with the Simons Searchlight team via the website is not intended to and does not constitute medical advice, and no doctor/patient relationship is formed. Simons Searchlight and the Simons Foundation accept no liability for the website’s content or for the consequences of any actions taken on the basis of the information provided. The accuracy, completeness, adequacy or currency of the content is not warranted or guaranteed. The use of information on the site or materials linked from the site is at the user’s own risk. The contents of the site — such as text, graphics, images and other materials — are for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Users should always seek the advice of physicians or other qualified health providers with any questions regarding a medical condition. Users should never disregard professional medical advice or delay in seeking it because of something on the site. The site does not recommend or endorse any specific tests, products, procedures, opinions or other information that might be mentioned on the site.

Intellectual property rights

All content on this site is the property of the Simons Foundation or its affiliates, licensors or third-party content providers, including our visitors. The Simons Foundation reserves all rights and title to all original and copyrightable materials on the site of which we are the author or for which we have otherwise obtained title, including but not limited to the text, design, manuals, information, content, graphics, images, pictures, sound and other files and the selection, compilation and arrangement thereof in its collective sense. You will not copy, modify, redistribute, broadcast, publish, adapt, translate, prepare derivative works from, commercially exploit, sell, license, decompile, reverse engineer, disassemble or otherwise attempt to derive source code from any of our services, software, content or documentation, or create or attempt to create a substitute or similar service or product through use of or access to this site or any related site or proprietary information related thereto, without our prior written consent. Reprinting or any other public display of our original content without express written permission is prohibited. Furthermore, you may not remove or obscure the copyright notice or any other notices contained in the site or in anything retrieved or downloaded from it.

The names, trademarks, service marks and design marks (including logos) used on this site are the property of the Simons Foundation or its affiliates, licensors or third-party content providers, and you will not use any such name or mark in any advertising or publicity or otherwise to indicate the sponsorship of or affiliation with any product or service, without the prior written consent of the owner of any such name or mark.

Accepted standards of behavior

We encourage you to use the website but to do so responsibly. In doing so, you agree to abide by the following rules:

• not to make any personal attack on any person, group of people, firm or company;
• not to submit, or create any link to, any defamatory, obscene or profane (even if disguised with asterisk or other typography), indecent, lewd, pornographic, violent, abusive, offensive, insulting, threatening, menacing, unlawful or blasphemous material;
• not to submit, or create any link to, any material that is an invasion of privacy, a breach of any data protection principle or legislation, a malicious falsehood or seditious libel, a contempt of court or that is likely to incite or is capable of inciting violence, racial hatred, sadism or cruelty or that encourages any unlawful or illegal act or omission;
• not to submit, or create any link to, any material that is intentionally false or that is misleading, or that causes annoyance, inconvenience or needless anxiety or that is potentially damaging or harmful;
• not to infringe on any of Simons Foundation’s or other third party’s copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy;
• not to impersonate anyone else, whether a public figure, a member of our staff, a forum moderator, administrator or host, or other visitor of this site;
• not to state or represent falsely that you are connected to, or affiliated with, any individual or entity;
• not to transmit or otherwise make available any personal information of any individual or any material protected by copyright, trademark, publicity, privacy or other proprietary right without the express permission of such individual or the owner of such rights, respectively;
• not to promote or advertise, or engage in any other form of marketing, including (without limitation) chain letters or pyramid selling, even if you are acting on behalf of a nonprofit organization or a charity;
• not to disclose, post, publish, display, or transmit any of the website content, without the written consent of Simons Foundation;
• not knowingly to violate any law or regulation while using our website;
• not to use our website to collect personal data about other individuals;
• not to submit, or create a link to, any file that contains any virus, corrupted data, Trojan horse or anything else that might damage, destroy or render inaccessible any data or files on any computer;
• not to use the website as a forwarding service to another website;
• not to stalk or otherwise harass another person; and
• not try to circumvent the security features of this website, or tamper with, hack into or in any other way disrupt or disable any computer system, server, website, router or other device used to host this website or make it available.

We reserve the right to monitor user content, to investigate and/or take appropriate action against users who violate these accepted standards of behavior or any other provision of these Terms of Use.

Revisions and errata, non-reliance, and waiver of liability

The materials appearing on the Simons Searchlight web portal may include technical, typographical, scientific or photographic errors. We do not warrant that any of the materials on our website are accurate, complete or current, or that the site will operate error free or without interruption. We shall not be liable to you or any third party for any loss or damage of any kind arising from your use of this site, or your dissemination of or reliance on any content contained on this site, and you hereby waive any claim against us and our employees, officers, directors and agents regarding your use of, dissemination of or reliance on this site.

We may make changes to the materials contained on the Simons Searchlight web portal at any time without notice. However, we do not make any commitment to update the materials.

You acknowledge and agree that we have no responsibility for the information, content, products, services, advertising, code or other materials which may or may not be provided by or through other websites that are linked to this site, even if they are owned or run by affiliates or partners of ours. We have no control over their content or availability.

Our staff has not reviewed all of the sites linked to this website. The inclusion of any link on our site does not imply endorsement by the Simons Foundation of the linked site. Use of any such linked website is at the user’s own risk, and we recommend that you review the terms of use and privacy policies of those sites, as they may differ from those of this site. 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.

Any opinion, advice, statement, service, offer or information or content provided or made by any third party on this website, or on any website to which this website is linked, is that of the author or provider, and not of the Simons Foundation.

You should direct any concern about any other website to that site’s website administrator or webmaster.

Governing law and jurisdiction

This Agreement shall be governed by and construed in accordance with the substantive laws of New York, without any reference to conflict-of-laws principles. Any dispute, controversy or difference which may arise between the parties out of, in relation to or in connection with these Terms of Use is hereby irrevocably submitted to the exclusive jurisdiction of the courts of New York, to the exclusion of any other courts without giving effect to its conflict of laws, provisions or your actual state or country of residence.

If any of these Terms of Use is (for any reason) held to be unenforceable, illegal or in some other way invalid, the unenforceable, illegal or invalid provision will not affect the remainder of these Terms of Use, and they will continue in full force and effect.

Simons Foundation makes no claims that information on the website 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 website 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 website will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law and our Privacy Policy.

If you are a non-U.S. user, you acknowledge and agree that Simons Foundation and Simons Searchlight may collect and use your Information and disclose it to other entities outside your resident jurisdiction. In addition, such Information may be stored on servers located outside your resident jurisdiction. U.S. law may not provide the degree of protection for Information that is available in other countries. By providing us with your Information, you acknowledge that you consent to the transfer of such Information outside your resident jurisdiction as detailed in our Privacy Policy. If you do not consent to such transfer, you may not use this website.

Disclaimers and limitation of Liability

YOU AGREE THAT YOUR USE OF THE SIMONS SEARCHLIGHT WEB PORTAL SHALL BE AT YOUR SOLE RISK. TO THE FULLEST EXTENT PERMITTED BY LAW, SIMONS SEARCHLIGHT, SIMONS FOUNDATION, ITS OFFICERS, DIRECTORS, EMPLOYEES, PARTNERS, CONTRIBUTERS AND AGENTS DISCLAIM ALL WARRANTIES, EXPRESS OR IMPLIED, IN CONNECTION WITH THE WEB PORTAL AND YOUR USE THEREOF. SIMONS SEARCHLIGHT AND SIMONS FOUNDATION MAKE NO WARRANTIES OR REPRESENTATIONS ABOUT THE ACCURACY OR COMPLETENESS OF THIS WEB PORTAL’S CONTENT, ADVICE, PRODUCTS OR SERVICES OR THE CONTENT, ADVICE, PRODUCTS OR SERVICES OF ANY SITES LINKED TO THE WEB PORTAL AND ASSUME NO LIABILITY OR RESPONSIBILITY FOR ANY (I) ERRORS, MISTAKES, OMISSIONS, INACCURACIES, OR LACK OF AUTHENTICITY IN CONTENT; (II) PERSONAL INJURY OR PROPERTY DAMAGE, OF ANY NATURE WHATSOEVER, RESULTING FROM YOUR ACCESS TO AND USE OF THE WEB PORTAL; (III) ANY UNAUTHORIZED ACCESS TO OR USE OF OUR SECURED SERVERS AND/OR ANY AND ALL PERSONAL INFORMATION STORED THEREIN; (IV) ANY INTERRUPTION OR CESSATION OF TRANSMISSION TO OR FROM THE WEB PORTAL; (V) ANY BUGS, VIRUSES, TROJAN HORSES OR THE LIKE THAT MAY BE TRANSMITTED TO OR THROUGH THE WEB PORTAL BY ANY THIRD PARTY; AND/OR (VI) ANY ERRORS OR OMISSIONS IN ANY CONTENT OR FOR ANY TANGIBLE OR INTANGIBLE LOSS, MISUSE, UNAUTHORIZED ACCESS, ALTERATION OR DAMAGE OF ANY KIND INCURRED AS A RESULT OF THE USE OF ANY CONTENT POSTED, EMAILED, TRANSMITTED OR OTHERWISE MADE AVAILABLE VIA THE WEB PORTAL. SIMONS SEARCHLIGHT AND SIMONS FOUNDATION DO NOT WARRANT, ENDORSE, GUARANTEE OR ASSUME RESPONSIBILITY FOR ANY PRODUCT OR SERVICE ADVERTISED OR OFFERED BY A THIRD PARTY THROUGH THE WEB PORTAL OR ANY SITES LINKED TO THE WEB PORTAL.

TO THE EXTENT PERMITTED BY APPLICABLE LAW, NEITHER SIMONS SEARCHLIGHT NOR SIMONS FOUNDATION, ITS OFFICERS, DIRECTORS, EMPLOYEES, PARTNERS, CONTRIBUTERS OR AGENTS SHALL BE LIABLE TO YOU FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, PUNITIVE OR CONSEQUENTIAL DAMAGES WHATSOEVER RESULTING FROM OR RELATING TO THESE TERMS OF USE, YOUR USE OF, OR INABILITY TO USE, THE WEB PORTAL, WHETHER OR NOT WE HAVE BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES.

YOU HEREBY ACKNOWLEDGE THAT THE ABOVE PARAGRAPHS 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 SIMONS AND ITS RESPECTIVE AFFILIATES, PARTNERS, CONTRIBUTORS, OFFICERS, DIRECTORS, EMPLOYEES, ASSIGNS, ATTORNEYS AND AGENTS.

If you have any questions regarding these Terms of Use, please contact us at coordinator@simonssearchlight.org.