Effective as of September 1, 2016
IMPORTANT – PLEASE READ THE FOLLOWING TERMS AND CONDITIONS (REFERENCED COLLECTIVELY HEREIN AS THE “TOU”) BEFORE USING THE www.gaucherdisease.org WEBSITE AND ANY MATERIALS, SOFTWARE FUNCTIONALITY, AND INFORMATION AVAILABLE THROUGH THIS WEBSITE (THE FOREGOING COLLECTIVELY REFERENCED HEREIN AS THIS “SITE”). NATIONAL GAUCHER FOUNDATION, INC. (“NATIONAL GAUCHER FOUNDATION”), AS OWNER AND OPERATOR OF THIS SITE (WORKING IN CONJUNCTION WITH ITS AFFILIATE NATIONAL GAUCHER CARE FOUNDATION, INC. (COLLECTIVELY, “NGF”), IS WILLING TO LICENSE THE USE OF THIS SITE TO YOU ONLY ON THE CONDITION THAT YOU ACCEPT ALL OF THE TERMS AND CONDITIONS CONTAINED IN THIS TOU. IF YOU DO NOT AGREE WITH THIS TOU, YOU ARE NOT GRANTED PERMISSION BY NGF TO ACCESS OR OTHERWISE USE THIS SITE AND ARE INSTRUCTED TO EXIT THIS SITE IMMEDIATELY.
1. LICENSE GRANT. This TOU provides to you (identified herein as “you” or a “user” or with “your”) a personal, revocable, limited, non-exclusive, royalty-free, nontransferable, and nonsublicenseable license to use this Site conditioned on your continued compliance with the terms and conditions of this TOU. Additionally, this TOU provides to you a personal, revocable, limited, non-exclusive, nonsublicenseable license to post a plain text link to this Site from your personal web page or social media page using “gaucherdisease.org.” You may print and download materials and information from this Site solely for your personal use, provided that all hard copies contain all copyright and other applicable notices contained in such materials and information and that you do not distribute or further disclose such materials and information. If you wish to distribute or display the materials and information found on this Site or to use such materials and information for commercial purposes, you may contact National Gaucher Foundation using the contact information set forth in Section 24 below. This TOU is only a license and not an assignment or sale. Accordingly, you expressly acknowledge and agree that National Gaucher Foundation transfers no ownership or intellectual property interest or title in and to this Site to you or anyone else. You also acknowledge and agree to the following: (a) the National Gaucher Foundation has the right to control and direct the means, manner, and method by which the Site(s) is provided; (b) the National Gaucher Foundation may, from time to time work with affiliated entities, including but not limited to National Gaucher CARE Foundation, and/or engage independent contractors, consultants, or subcontractors to aid the National Gaucher Foundation in providing the Site(s) or use thereof; and (iii) the NGF has the right to provide the Site(s) to others.
2. LICENSE GRANT RESTRICTIONS. Notwithstanding the foregoing, you may not modify, translate, decompile, create derivative work(s) of, copy, distribute, disassemble, broadcast, transmit, publish, remove or alter any proprietary notices or labels, license, sublicense, transfer, sell, mirror, frame, exploit, rent, lease, private label, grant a security interest in, or otherwise use in any manner not expressly permitted herein this Site. Moreover, you may not (i) use any “deep link,” “page scrape,” “robot,” “spider,” or other automatic device, program, script, algorithm, or methodology, or any similar or equivalent manual process, to access, acquire, copy, or monitor any portion of this Site or in any way reproduce or circumvent the navigational structure or presentation of this Site to obtain or attempt to obtain any materials, documents, or information through any means not purposely made available through this Site; (ii) attempt to gain unauthorized access to any portion or feature of this Site or any system(s) or network(s) connected to this Site or to any NGF server(s) or to any of the services offered on or through this Site, by hacking, password “mining,” or any other illegitimate means; (iii) probe, scan, or test the vulnerability of this Site or any network connected to this Site; (iv) breach the security or authentication measures on or for this Site or any network(s) connected to this Site; (v) reverse look-up, trace, or seek to trace any information on any other user of or visitor to this Site; (vi) take any action that imposes an unreasonable or disproportionately large load on the infrastructure of this Site or NGF’s system(s) or network(s) or any system(s) or network(s) connected to this Site; (vii) use any device, software, or routine to interfere with the proper working of this Site or any transaction conducted on this Site, or with any other person’s use of this Site, (viii) forge headers, impersonate a person, or otherwise manipulate identifiers in order to disguise your identity or the origin of any message or transmittal you send to NGF on or through this Site, (ix) use this Site to harvest or collect email addresses or other personally identifiable information, or (x) use this Site in an unlawful manner or in a manner that could damage, disparage, or otherwise negatively impact NGF. WITHOUT LIMITING THE GENERALITY OF THE FOREGOING, COPYING OR REPRODUCING ANY INFORMATION OR MATERIALS PROVIDED BY NGF TO ANY OTHER SERVER OR LOCATION FOR FURTHER REPRODUCTION OR REDISTRIBUTION IS EXPRESSLY PROHIBITED.
3. NON-PROFIT STATEMENT. Each of The National Gaucher Foundation, Inc. and National Gaucher CARE Foundation, Inc. is exempt from federal income tax pursuant to Section 501(c)(3) of the Internal Revenue Code of 1986, as amended. The National Gaucher Foundation, Inc.’s employer identification number is 52-1350226. National Gaucher CARE Foundation, Inc.’s employer identification number is 52-1815708. Donations to each organization are tax-deductible to the extent permitted by law. NGF does not provide legal, accounting, tax, or financial advice, and donors should consult with their tax advisors to determine the actual deductibility of any donation. Each of The National Gaucher Foundation, Inc. and National Gaucher CARE Foundation, Inc. is incorporated in the State of Maryland, and a copy of each organization’s Articles of Incorporation may be obtained from the Maryland State Department of Assessments and Taxation.
4. DISCLAIMER. The information maintained on this Site is provided for informational and educational purposes ONLY and is not intended to constitute or substitute for the medical diagnosis, treatment and advice rendered by a qualified practitioner. If you are seeking medical advice, you should consult directly with a physician or other qualified practitioner.
The information maintained on this Site is provided as a resource to patients, family and other interested parties who are seeking information about Gaucher Disease. All information on this Site has been obtained either directly through the listed medical practitioners, organizations and companies or from public documentation. NGF is independent from and does not endorse any of the companies, practitioners or products featured on the Website, unless specifically designated as such.
5. The Site can be accessed from different locations around the world and may contain references to services and programs that are not available where you are located. NGF does not represent or warrant that any particular service or program will be available in your geographic location.
6. USER OBLIGATIONS. By installing, accessing, or using this Site in order to view NGF’s information and materials or enter into a transaction through this Site, you represent that you are at least eighteen (18) years of age (or the legal age of majority) (whichever is greater) and will, at all times, provide true, accurate, current, and complete information when submitting information or materials on or through this Site, including, without limitation, when you provide information via a Site registration or submission form. If you provide any false, inaccurate, untrue, or incomplete information, we reserve the right to terminate immediately your access and use of this Site. In addition, you agree to abide by all applicable local, state, national, and international laws and regulations with respect to your use of this Site. You also acknowledge and agree that use of the Internet and this Site is solely at your own risk. While NGF has endeavored in each instance to create a secure and reliable Site, you should understand that the confidentiality of any communication or material transmitted to/from this Site over the Internet or other global communication network cannot be guaranteed. Accordingly, NGF is not responsible for the security of any information transmitted via the Internet or other global communication network.
7. PROPRIETARY RIGHTS. All text, graphics, user interfaces, visual interfaces, photographs, audio, video, sounds, artwork, computer code (including html code), programs, software, products, information, and documentation as well as the design, structure, selection, coordination, expression, “look and feel,” and arrangement of any content contained on or available through this Site, unless otherwise indicated, are owned, controlled, and licensed by NGF and/or its licensors and are protected by law including, but not limited to, United States copyright, trade secret, patent, and trademark law, as well as other state, national, and international laws and regulations. Except as expressly provided herein, NGF does not grant any express or implied right to you or any other person under any intellectual or proprietary rights. Accordingly, your unauthorized use of this Site may violate intellectual property or other proprietary rights laws as well as other laws, regulations, and statutes. This Site is Copyright © 2016 National Gaucher Foundation, Inc. and/or its licensors. All rights reserved. NGF also owns a copyright in the contents of this Site as collective work and/or compilation and in the selection, coordination, arrangement, and enhancement of the content of this Site. Any downloadable or printable information or materials available through this Site, unless otherwise indicated, are owned by NGF and/or its licensors. NGF, the National Gaucher Foundation, Inc. logo, and all other names, logos, and icons identifying NGF and its programs, products, and services are proprietary trademarks of NGF, and any use of such marks without the express written permission of NGF is strictly prohibited. Other product or company names mentioned herein may be the trademarks and/or service marks of their respective owners.
8. ON-LINE-DONATIONS; SPECIFIC PROGRAMS; OTHER TERMS AND CONDITIONS. Additional notices, terms, and conditions may apply to donations, purchase of goods, participation in a particular program, and/or to specific portions or features of this Site. You agree to abide by such other notices, terms, and conditions, as applicable. If there is a conflict between this TOU and the terms posted for or applicable to a specific portion of this Site, the latter terms shall control with respect to your use of that portion of this Site.
9. PRIVACY POLICY. You understand, acknowledge, and agree that the operation of certain portions of this Site and/or the receipt of certain information, such as registering through this Site to receive newsletters, requires the submission, use, and dissemination of various personally identifiable information. Accordingly, if you wish to access and use those areas of this Site or receive access to the associated information, materials, or functionality, you acknowledge and agree that your use of this Site will constitute acceptance of NGF’s personally identifiable information collection and use practices. Please see NGF’s Privacy Policy for a summary of NGF’s personally identifiable information collection and use practices.
10. Mobile Services. This Site may offer certain tools or online functionality that are available to you via your mobile phone or other mobile device (collectively, “Mobile Services”). Please note that your mobile carrier’s normal messaging, data, and other rates and fees will apply to your use of the Mobile Services. In addition, downloading, installing, or using certain Mobile Services may be prohibited or restricted by your mobile carrier, and not all Mobile Services may work with all carriers or devices. Therefore, you are responsible for checking with your mobile carrier to determine if the Mobile Services are available for your mobile device(s), what restrictions, if any, may be applicable to your use of the Mobile Services, and how much they will cost you. Nevertheless, all use of this Site and its Mobile Services shall be in accordance with this TOU.
11. FEEDBACK. NGF welcomes your feedback and suggestions about how to improve this Site. By transmitting any suggestions, information, material, or other content (collectively, “feedback”) to NGF, you represent and warrant that such feedback does not infringe the intellectual property or proprietary rights of any third party (including, without limitation, patents, copyrights, or trademark rights) and that you have all rights necessary to convey such feedback to NGF. In addition, any feedback received through this Site will be deemed to include a royalty-free, perpetual, irrevocable, transferable, non-exclusive right and license for NGF to adopt, publish, reproduce, disseminate, transmit, distribute, copy, use, create derivative works, and display (in whole or in part) worldwide, or act on such feedback without additional approval or consideration, in any form, media, or technology now known or later developed, and for the full term of any rights that may exist in such content, and you hereby waive any claim to the contrary.
12. LINKS TO OTHER SITES. NGF may provide links, in its sole discretion, to other sites on the World Wide Web for your convenience in locating related information, products, and services. Such other sites are maintained by third parties over which NGF exercises no control. Accordingly, NGF expressly disclaims any responsibility for the content, the materials, the accuracy of the information, and/or quality of the information, products or services provided by, available through, or advertised on these third party web sites. Moreover, these links do not imply an endorsement with respect to any third party or any third party web site or the information, products, or services provided by any third party.
13. LINKS TO THIS SITE. Per the license grant above, NGF encourages and permits (plain) hypertext links to the primary landing page for this Site (www.gaucherdisease.org). NGF is an organization committed to the highest ethics and standards and therefore, any links to this Site should not suggest that NGF promotes or otherwise endorses or is affiliated with any third party products, services, programs, causes, campaigns, websites, or information unless NGF has provided prior written consent for such promotion, affiliation, or endorsement.
14. DISCLAIMER. THIS SITE IS PROVIDED ON AN “AS-IS” AND “AS AVAILABLE” BASIS AND MAY INCLUDE ERRORS, OMISSIONS, OR OTHER INACCURACIES. MOREOVER, NGF MAY MAKE MODIFICATIONS AND/OR CHANGES WITH RESPECT TO THIS SITE AT ANY TIME AND FOR ANY REASON. YOU ASSUME THE SOLE RISK OF MAKING USE AND/OR RELYING ON THIS SITE. NGF MAKES NO REPRESENTATIONS OR WARRANTIES, EITHER EXPRESS OR IMPLIED, ABOUT THE SUITABILITY, COMPLETENESS, TIMELINESS, RELIABILTY, LEGALITY, OR ACCURACY OF THE INFORMATION, SERVICES, PROGRAMS, PRODUCTS, SOFTWARE, AND MATERIALS AVAILABLE ON OR THROUGH THIS SITE FOR ANY PURPOSE, AND EXPRESSLY DISCLAIMS ALL WARRANTIES, EXPRESS OR IMPLIED, INCLUDING, WITHOUT LIMITATION, ANY WARRANTY OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, OR NON-INFRINGEMENT.
15. LIMITATION OF LIABILITY. YOU EXPRESSLY ABSOLVE AND RELEASE NGF AND EACH OF ITS AFFILIATES, OFFICERS, DIRECTORS AND EMPLOYEES (“THE RELEASED PARTIES”), FROM ANY CLAIM OF HARM RESULTING FROM A CAUSE BEYOND THE RELEASED PARTIES’ CONTROL, INCLUDING, BUT NOT LIMITED TO, FAILURE OF ELECTRONIC OR MECHANICAL EQUIPMENT OR COMMUNICATION LINES, TELEPHONE OR OTHER INTERCONNECT PROBLEMS, COMPUTER VIRUSES, UNAUTHORIZED ACCESS, THEFT, OPERATOR ERRORS, SEVERE WEATHER, EARTHQUAKES, OR NATURAL DISASTERS, STRIKES, OR OTHER LABOR PROBLEMS, WARS, OR GOVERNMENTAL RESTRICTIONS. MOREOVER, IN NO EVENT SHALL THE RELEASED PARTIES BE LIABLE FOR ANY INDIRECT, PUNITIVE, INCIDENTAL, SPECIAL, OR CONSEQUENTIAL DAMAGES ARISING OUT OF OR IN ANY WAY CONNECTED WITH THE USE OF THIS SITE OR WITH THE DELAY OR INABILITY TO USE THIS SITE, OR FOR ANY INFORMATION, SERVICES, PROGRAMS, PRODUCTS, SOFTWARE, AND MATERIALS AVAILABLE THROUGH THIS SITE, OR OTHERWISE ARISING OUT OF UTILIZATION OF THIS SITE, WHETHER BASED IN CONTRACT, TORT, STRICT LIABILITY, OR OTHERWISE, EVEN IF THE RELEASED PARTIES HAVE BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES. BECAUSE SOME STATES/JURISDICTIONS DO NOT ALLOW THE EXCLUSION OR LIMITATION OF LIABLITY FOR CONSEQUENTIAL OR INCIDENTAL DAMAGES, THE ABOVE LIMITATION MAY NOT APPLY. NOTWITHSTANDING THE FOREGOING, TOTAL LIABILITY OF NGF FOR ANY REASON WHATSOEVER RELATED TO USE OF THIS SITE SHALL NOT EXCEED $100.
16. INDEMNIFICATION. You agree to indemnify and hold harmless the Released Parties, from any claim or demand, including reasonable attorneys’ fees, made by any third party due to or arising out of your use of this Website, the violation of these Terms of Use by you, or the infringement by you of any intellectual property or other right of any person or entity.
17. GOVERNING LAW. This TOU has been made in and will be construed and enforced in accordance with the laws of the State of Maryland as applied to agreements entered into and completely performed in the State of Maryland. Any action to enforce this TOU will be brought in the federal or state courts presiding in Rockville, Maryland, U.S., and all parties to this TOU expressly agree to be subject to the jurisdiction of such courts. Any claim you might have against the Released Parties must be brought within one (1) year after the cause of action arises, or such claim or cause of action is barred. A printed version of this TOU and of any related notice given in electronic form shall be admissible in judicial or administrative proceedings based upon or relating to this TOU to the same extent and subject to the same conditions as other business documents and records originally generated and maintained in printed form. This Site is controlled and operated by NGF from its offices within the United States. NGF makes no representation that this Site is appropriate or available for use in other locations, and access to this Site from territories or nations where any aspect of this Site is illegal is prohibited. You access this Site on your own volition and are responsible for compliance with all applicable local laws.
18. ENFORCING SECURITY ON THIS SITE. Actual or attempted unauthorized use of this Site may result in criminal and/or civil prosecution, including, without limitation, punishment under the Computer Fraud and Abuse Act of 1986 under U.S. federal law. NGF reserves the right to view, monitor, and record activity on this Site without notice or permission from you, including, without limitation, by archiving notices or communications sent by you through this Site. Any information obtained by monitoring, reviewing, or recording is subject to review by law enforcement organizations in connection with investigation or prosecution of possible criminal or unlawful activity on this Site as well as to disclosures required by or under applicable law or related government agency actions. NGF will also comply with all court orders or subpoenas involving requests for such information. In addition to the foregoing, NGF reserves the right to, at any time and without notice, modify, suspend, terminate, or interrupt operation of or access to this Site, or any portion of this Site in order to protect this Site, NGF, or NGF’s business
19. INJUNCTIVE RELIEF. You acknowledge that any breach, threatened or actual, of this TOU, including, without limitation, with respect to unauthorized use of NGF proprietary assets, will cause irreparable injury to the Released Parties, such injury would not be quantifiable in monetary damages, and the Released Parties would not have an adequate remedy at law. You therefore agree that the Released Parties shall be entitled, in addition to other available remedies, to seek and be awarded an injunction or other appropriate equitable relief from a court of competent jurisdiction restraining any breach, threatened or actual, of your obligations under any provision of this TOU. Accordingly, you hereby waive any requirement that the Released Parties post any bond or other security in the event any injunctive or equitable relief is sought by or awarded to the Released Parties to enforce any provision of this TOU.
20. TERM AND TERMINATION. This TOU will take effect (or re-take effect) at the time you respond to a request for or send a request for information or materials, and/or begin accessing or using this Site, WHICHEVER IS EARLIEST. NGF reserves the right at any time and for any reason to deny you access to this Site or to any portion thereof. This TOU will terminate automatically if you fail to comply with this TOU, subject to the survival rights of certain provisions identified below. Termination will be effective without notice. You may also terminate this TOU at any time by ceasing to use this Site, but all applicable provisions of this TOU will survive termination, as identified below, and each re-access or use of this Site will reapply the Terms of Use (then in effect) to you. Upon termination, you must destroy all copies of any aspect of this Site in your possession or control. The provisions concerning proprietary rights, feedback, disclaimer of warranty, limitation of liability, governing law, enforcing security on this Site, injunctive relief, term and termination, waiver and severability, and entire agreement will survive the termination of this TOU for any reason.
21. WAIVER & SEVERABILITY. Failure to insist on strict performance of any of the terms and conditions of this TOU will not operate as a waiver of any subsequent default or failure of performance. No waiver by NGF of any right under this TOU will be deemed to be either a waiver of any other right or provision or a waiver of that same right or provision at any other time. If any part of this TOU is determined to be invalid or unenforceable pursuant to applicable law including, but not limited to, the warranty disclaimers, venue, claim, and liability limitations set forth above, then the invalid or unenforceable provision will be deemed superseded by a valid, enforceable provision that most clearly matches the intent of the original provision and the remainder of this TOU shall continue in effect.
22. ENTIRE AGREEMENT. No joint venture, partnership, employment, or agency relationship exists between you and NGF as result of this TOU or your utilization of any this Site. This TOU, NGF’s Privacy Policy, and any related or associated product purchase, service, or software license agreements, which are all hereby incorporated by reference (as applicable) as if set forth fully herein, represent the entire agreement between you and NGF with respect to use of this Site, and supersede all prior or contemporaneous communications and proposals, whether electronic, oral, or written between you and NGF with respect to this Site. Please note that National Gaucher Foundation reserves the right to change the terms and conditions of this TOU and the terms and conditions under which this Site and its offerings are extended to you by posting online a revised TOU or mailing and/or e-mailing notice thereof to you. In addition, NGF may add, modify, or delete any aspect, program, functionality, or feature of this Site. Your continued use of this Site following any addition, modification, or deletion will be conclusively deemed acceptance of any change to the terms and conditions of this TOU. Accordingly, please review this TOU found at this location on a periodic basis.
23. CONTACT INFORMATION. If you have questions regarding this Site or if you are interested in obtaining more information concerning NGF or permission to use any NGF content, please contact the National Gaucher Foundation, Inc. at 301.503.1452 (phone), or info@gaucherdisease.org (e-mail).
