Terms of Use
Date of Last Revision: May 19, 2019
Welcome to the Loeys-Dietz Syndrome Foundation (“us”, “we”, or "LDSF") website (the "Site"), which is designed to provide you with information about Loeys-Dietz syndrome, and gives you access to certain services, as more fully described below (collectively, the “Service”). By accessing or using the Service, you become a “User” and, by your use, signify that you have read, you understand and you agree to be bound by these Terms of Use (these “Terms”). These Terms are a legally binding contract between you and the LDSF and they govern your relationship with the LDSF and your right to access and use the Service. If you do not agree to be bound by these Terms, you are not authorized to, and may not, use or access the Service OR THE SITE.
We reserve the right, at our sole discretion, to change, modify, add or delete portions of these Terms at any time. If we do this, we will post the changes to these Terms on this page and will indicate at the top of this page the date they were last revised. Your continued use of the Service after any such changes constitutes your acceptance of the new Terms. If you do not agree to abide by any future Terms, you may not use or access (or continue to use or access) the Service. It is your responsibility to regularly check the Site to determine if there have been changes to these Terms and to review such changes. PLEASE READ THESE TERMS CAREFULLY SINCE THEY CONTAIN IMPORTANT INFORMATION REGARDING YOUR LEGAL RIGHTS, OBLIGATIONS, AND REMEDIES, INCLUDING VARIOUS LIMITATIONS AND EXCLUSIONS.
1. Eligibility
The use of the Service is void where prohibited. The Service is intended solely for individuals who are 13 years of age or older, and if you are under 13 years old, please do not use the Service. Any registration by, use of, or access to the Service by anyone else is unauthorized, unlicensed, and a violation of these Terms. By using the Service you represent and warrant that you are 13 years of age or older.
2. Description of the Service
The Service allows you, among other things, to receive information and updates about Loeys-Dietz syndrome, to become a LDSF volunteer, to create and update a profile, to connect and stay in touch with other Users, to donate online, to support our activity, to upload and share content, to participate in discussion forums or groups on a variety of topics, to chat with other Users, exchange messages with other Users, and create and participate in groups of people with similar interests.
3. Online Donations
The Site allows you to make online donations through third party vendors. Your donations will help support the LDSF’s mission to encourage education, foster research and provide support for those impacted by Loeys-Dietz syndrome (LDS). The Loeys-Dietz Syndrome Foundation is a division of The Marfan Foundation. Through this relationship, donations to the Loeys-Dietz Syndrome Foundation are tax-deductible and directly support our mission. You will receive a donation receipt from The Marfan Foundation.
4. Content available through the Service
All content, including but not limited to designs, text, graphics, pictures, video, information, applications, software, music, sound, and other files, made available by the LDSF or posted by Users through the Service or on the Site (the "Content") is the exclusive property of the LDSF or the Users who posted it, or their licensors. All Content that you post on our Members Community Page and that you make available through the Service (“Your Content”) remains your property and the LDSF does not claim any ownership on it. No Content may be modified, copied, distributed, framed, reproduced, republished, downloaded, displayed, posted, transmitted, or sold in any form or by any means, in whole or in part, without the permission of the LDSF or its owners, except as explicitly stated herein and except that the foregoing does not apply to Your Content lawfully posted. Any use of the Content other than as specifically authorized in these Terms without the prior written permission of the LDSF or its owners is strictly prohibited and will terminate your possibility to access and use the Service. Unless explicitly stated herein, nothing in these Terms shall be construed as conferring any license to intellectual property rights in the Content. You understand and agree that the Content (in particular, but without limitation, the medical and scientific information) available ON THE SITE OR through THE Service, is provided with the understanding that the LDSF is a voluntary health organization and is not engaged in rendering medical advice or recommendations on diagnosis or treatment of Loeys-Dietz syndrome, other related connective tissue disorders OR OTHERWISE. The Content provided is designed for educational and informational purposes only, in furtherance of the LDSF’s mission. Loeys-Dietz syndrome is a complex, multi-system disorder that can only be properly diagnosed and managed by skilled and trained health care professionals. The Content of THE SITE AND THE Service should not and cannot replace necessary consultations with qualified health care professionals.
5. Your Content and License to Your Content
You are exclusively responsible for Your Content. You may not post, transmit, or share on the Service any of Your Content that you did not create or that you do not have permission to post. If any of Your Content is subject to a license by a third party, it is your responsibility to make sure that any use of such Your Content complies with the third party license. By accessing and using the Service, you represent, warrant and agree that no materials of any kind submitted through your account or otherwise posted, transmitted, or shared by you on or through the Service will (i) violate or infringe upon the rights of any third party, including, without limitation, copyright, trademark, patent, privacy, publicity or other personal or proprietary rights; (ii) contain libelous, defamatory or otherwise unlawful material; or (iii) contain any harmful code, viruses, or other harmful or malicious software. You hereby grant the LDSF a nonexclusive, worldwide, royalty-free, perpetual, irrevocable, sublicenseable (through multiple levels) and transferable right and license to use, reproduce, create derivative works of, distribute, publicly perform and publicly display Your Content (a) for the purpose of operating and making Your Content available through the Service in all current and future media in which the Service may now or hereafter be distributed or transmitted or (b) for our other business purposes. You understand and agree that the LDSF may, but is not obligated to, remove (with or without notice) any of Your Content, for any reason or no reason, in the LDSF’s sole discretion. You are solely responsible at your sole cost and expense for creating backup copies and replacing any of Your Content you post or store on or through the Service.
6. Modification of the Service
The LDSF reserves the right at any time, and from time to time, to modify or discontinue, temporarily or permanently, the Service (or any part thereof) and/or to change any and all Content on the Service, with or without notice. You agree that the LDSF shall not be liable to you or to any third party for any modification, suspension or discontinuance of the Service (or any part thereof).
7. User Conduct
The Service is available for your personal, non-commercial use only. In consideration of your use of the Service in any manner (for example, by creating a profile, by participating in groups, by using any content or features, by posting or uploading any content, files, pictures, video or audio), you agree, when and as applicable, to (a) provide accurate, current and complete information about you; (b) maintain and promptly update your profile information, and any other information you provide using the Service; and (c) be fully responsible for all use of your account and for any actions that take place using your account. You are solely responsible for your conduct and any activity that is performed through your account. Except as expressly permitted under these Terms, you agree not to, nor will allow any third party to:
Use or attempt to use the Service in any manner that is unlawful, is harmful to minors in any way, that is misleading, deceptive or fraudulent or otherwise illegal or promotes illegal activities, including engaging in phishing or otherwise obtaining financial or other personal information in a misleading manner or for fraudulent or misleading purposes that facilitates the unlawful distribution of copyrighted or otherwise protected content, or in any other manner that could damage, disable or impair the Service;
Upload, transmit, post, share, store or otherwise make available on or through the Service (i) any content that we deem to be actually or potentially harmful, threatening, intimidating, unlawful, defamatory, infringing, abusive, inflammatory, harassing, annoying, vulgar, obscene, fraudulent, invasive of privacy or publicity rights, hateful or discriminatory based on race, color, sex, religion, nationality, ethnic or national origin, marital status, disability, sexual orientation or age; (ii) any content that would constitute, encourage, or provide instructions for any violent or criminal act, violate the rights of any person, firm or entity, or that would otherwise create liability for THE LDSF, or violate any local, state, national, or international law; (iii) any content that infringes, violates or misappropriates any third party's intellectual property rights or other proprietary or contractual rights; (vi) any private information of any third party, including, without limitation, addresses, phone numbers, email addresses, Social Security numbers, and credit card numbers; (v) any videos other than those of a personal nature that are of you, are taken by you with permission from those appearing in the video, or are original works of art or animation created by you; (vi) any unsolicited or unauthorized advertising, solicitations, promotional materials, junk mail, “spam,” chain letters, “pyramid schemes,” or any other form of solicitation; (vii) any material that contains software viruses or malicious code, or any other computer code, files, or programs designed to interrupt, destroy, or limit the functionality of any computer software or hardware or telecommunications equipment; or (viii) any content or information that is otherwise objectionable, as determined by us in our sole discretion; ·
Access, attempt to access, use or attempt to use, manually or with automated means, any other person’s account, service, or system without authorization from THE LDSF or that person;·
Harvest or collect email addresses or other contact information of other Users from the Service by manual, electronic or other automated means for the purposes of sending unsolicited emails or other unsolicited communications, or for any other purpose not expressly authorized herein; solicit passwords or personally-identifying information for commercial or unlawful purposes;·
Impersonate any person, firm, or entity, create a false identity or falsely state or otherwise misrepresent yourself, your age, or your affiliation with any person, firm, or entity.
8. Privacy
We care about the privacy of our Users. Click here to view our Privacy Policy. (LINK)
9. Trademarks
The LDSF, the LDSF heart and other LDSF graphics, logos, designs, scripts, page headers, screen icons and service names are service marks, trademarks or trade dress of the LDSF in the U.S. The LDSF's marks and trade dress may not be used, including as part of trademarks, service marks or domain names, in connection with any other product or service or in any manner that is likely to cause confusion, and may not be copied, imitated, or used, in whole or in part, without the prior written permission of the LDSF.
10. Copyright Infringement Complaints; Digital Millennium Copyright Act Compliance
The LDSF respects the intellectual property of others and requires that Users do the same. The LDSF is committed to respond to notices of alleged copyright infringement that comply with the Digital Millennium Copyright Act ("DMCA").
Notification of infringement
If you are a copyright owner or an agent thereof, and you believe that any content posted on the LDSF Community Site infringes your copyrights, then you may submit a notification pursuant to the DMCA by providing the LDSF's Designated Copyright Agent with the following information in writing:
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 on the LDSF Community Site that are covered by a single notification, a representative list of such works.
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 LDSF to locate the material. Providing URLs in the body of an email is the best way to help us locate content quickly.
4. Information reasonably sufficient to permit the LDSF 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.
Please note that under Section 512(f) of the DMCA any person who knowingly materially misrepresents that material or activity is infringing may be subject to liability.
You may submit your notification by sending it to our Designated Agent by mail or e-mail as set forth below.
Please note that the LDSF will send a copy of such notices to the individual that uploaded the allegedly infringing content. Additionally, please note that the LDSF may, at our discretion, send a copy of such notices to third-parties.
Counter-Notification
If you elect to send us a counter notice, to be effective it must be a written communication that includes the following:
1. A physical or electronic signature of the subscriber.
2. Identification of the material that has been removed or to which access has been disabled and the location at which the material appeared before it was removed or access to it was disabled.
3. A statement under penalty of perjury that the subscriber has a good faith belief that the material was removed or disabled as a result of mistake or misidentification of the material to be removed or disabled.
4. The subscriber's name, address, and telephone number, and a statement that the subscriber consents to the jurisdiction of Federal District Court for the judicial district in which the address is located, or if the subscriber's address is outside of the United States, for any judicial district in which the LDSF may be found, and that the subscriber will accept service of process from the person who provided notification or an agent of such person.
Please note that under Section 512(f) of the DMCA, any person who knowingly materially misrepresents that material or activity was removed or disabled by mistake or misidentification may be subject to liability.
You may submit your counter-notification by sending it to our Designated Agent by mail or e-mail as set forth below.
Designated Copyright Agent
The LDSF's Designated Copyright Agent to receive notifications and counter-notifications of claimed infringement can be reached as follows:
Attention: Copyright Agent
The Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
Email: info@loeysdietz.org
For clarity, only DMCA notices should go to the LDSF's Designated Copyright Agent. You acknowledge that if you fail to comply with all of the requirements of this section, your DMCA notice may not be valid.
11. Repeat Infringer Policy
In accordance with the DMCA and other applicable laws, the LDSF has adopted a policy of terminating, in appropriate circumstances and at the LDSF’s sole discretion, Users who are deemed to be repeat infringers. The LDSF may also at its sole discretion take the appropriate measures to limit access to the Service, and/or terminate the usage and any registrations and memberships, of any User who infringes any intellectual property rights or other rights of others, whether or not there is any repeat infringement.
12. Third Party Websites and Content
The Service and the Site may contain links to other web sites (“Third Party Sites”) as well as articles, photographs, text, graphics, pictures, designs, music, sound, video, information, applications, software, and other content or items belonging to or originating from third parties (collectively, the “Third Party Applications”). Such Third Party Sites and Third Party Applications are not investigated, monitored or checked for accuracy, appropriateness, or completeness by us, and we are not responsible for any Third Party Sites accessed through the Service or the Site, nor any Third Party Applications posted on, available through, or installed from the Service or the Site including, without limitation, the content, accuracy, opinions, reliability, offensiveness, privacy practices, or other policies of or contained in the Third Party Sites or the Third Party Applications. Inclusion of, linking to, or permitting the use or installation of any Third Party Site or any Third Party Applications does not imply approval or endorsement of such Third Party Sites or the Third Party Applications by us. If you decide to leave the Service or the Site and access the Third Party Sites or use or install any Third Party Applications, you do so at your own risk. You should review the applicable terms and policies, including privacy and data gathering practices, of any site to which you navigate from the Service or the Site or relating to any applications you use or install from that site.
13. User Disputes
You are solely responsible for your interactions with other Users. We reserve the right, but have no obligation, to monitor and intervene in disputes between you and other Users.
14. DISCLAIMERS
The Loeys-Dietz Syndrome Foundation, a division of The Marfan Foundation (the “Foundation”), is a health advocacy organization. The Foundation does not provide medical advice or treatment. We are not a healthcare provider. It is important to realize that information provided by the Foundation is not meant as a replacement for proper care from a doctor, therapist, etc. Information provided by the Foundation is not a substitute for medical treatment or psychological care. It is vital that you talk with your healthcare providers regarding the diagnosis and treatment of Marfan syndrome and related conditions and your symptoms/features. Minors should consult with a parent/legal guardian when considering treatment and providers.
Healthcare provider information is supplied solely by the providers themselves and is not checked or warranted by The Marfan Foundation. The Foundation provides contact information for healthcare providers who are known to have seen patients with Marfan syndrome and related conditions. The Foundation does not endorse or recommend individual healthcare providers. You are responsible for interviewing and selecting the practitioner. By requesting healthcare provider resources you understand and agree that the Foundation and its affiliates are not responsible for any providers’ services or lack thereof.
15. LIMITATIONS OF LIABILITY
The LDSF is not responsible or liable in any manner for THE Content, Your Content, THE PRODUCTS, any Third Party Applications OR MATERIALS, posted on The LDSF Community Page or in connection with the Service, or any Third Party Sites, whether posted or caused by Users, by the LDSF, by Joomsocial, by third parties, via links to or from the LDSF Community Page, or by any of the equipment or programming associated with or utilized in the Service. Although we provide rules for User conduct and postings, we do not control and are not responsible for what Users post, transmit, or share on The LDSF Community Page are not responsible for any offensive, inappropriate, obscene, unlawful, or otherwise objectionable content you may encounter using the Service or in connection with any Content, Third Party Applications or Third Party Sites. The LDSF is not responsible for the conduct, whether online or offline, of any Users of the Service or the Site. The Service or the Site may be unavailable from time to time for maintenance or for other reasons, with or without notice. The LDSF assumes no responsibility for any error, omission, interruption, deletion, defect, delay in operation or transmission, communications line failure, theft or destruction or unauthorized access to, or alteration of, User communications. The LDSF is not responsible for any technical malfunction or other problems of any telephone or broadband network or service, computer systems, servers or providers, computer or phone equipment, software, failure of email, technical problems or traffic congestion on the Internet or the Service, or combination thereof, including injury or damage to User’s or to any other person’s computer, mobile phone, or other hardware or software, related to or resulting from using or downloading materials in connection with the Service. IN NO EVENT WILL THE LDSF OR ITS DIRECTORS, MANAGERS, EMPLOYEES, OR AGENTS BE LIABLE TO YOU OR ANY OTHER PERSON FOR ANY DIRECT, INDIRECT, CONSEQUENTIAL, EXEMPLARY, INCIDENTAL, SPECIAL, OR PUNITIVE DAMAGES, INCLUDING FOR ANY LOST PROFITS OR LOST DATA ARISING FROM YOUR PURCHASE AND USE OF THE PRODUCTS, YOUR USE OF THE SERVICE, THE SITE, YOUR CONTENT OR ANY OF THE CONTENT OR OTHER MATERIALS ON, ACCESSED THROUGH, OR DOWNLOADED FROM THE SERVICE, EVEN IF THE LDSF IS AWARE OR HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES. NOTWITHSTANDING ANYTHING TO THE CONTRARY CONTAINED HEREIN, THE LDSF’S LIABILITY TO YOU FOR ANY CAUSE WHATSOEVER, AND REGARDLESS OF THE FORM OF THE ACTION, WILL AT ALL TIMES BE LIMITED TO THE AMOUNT PAID, IF ANY, BY YOU TO THE LDSF FOR THE SERVICE OR THE PRODUCTS. YOU ACKNOWLEDGE THAT IF NO FEES ARE PAID TO THE LDSF FOR THE SERVICE OR THE PRODUCTS, YOU SHALL BE LIMITED TO INJUNCTIVE RELIEF ONLY, LIMITED TO THE SPECIFIC ONGOING DAMAGE, IF ANY UNLESS OTHERWISE PERMITTED BY LAW, AND SHALL NOT BE ENTITLED TO DAMAGES OF ANY KIND FROM THE LDSF, REGARDLESS OF THE CAUSE OF ACTION.
16. EXCLUSIONS AND LIMITATIONS
CERTAIN STATE LAWS DO NOT ALLOW LIMITATIONS ON IMPLIED WARRANTIES OR THE EXCLUSION OR LIMITATION OF CERTAIN DAMAGES. IF THESE LAWS APPLY TO YOU, SOME OR ALL OF THE ABOVE DISCLAIMERS, EXCLUSIONS OR LIMITATIONS MAY NOT APPLY TO YOU, AND YOU MAY HAVE ADDITIONAL RIGHTS.
17. Indemnity
You agree to indemnify and hold the LDSF, its affiliates, and each of their directors, officers, members, managers, agents, contractors, partners and employees, harmless from and against any loss, liability, claim, demand, damages, costs, and expenses, including reasonable attorney’s fees and expenses (including, without limitation, any incurred in the enforcement of this indemnity), arising out of or in connection with Your Content, any other Content, any Third Party Applications you post or share on or through the Service or the Site, your use of the Service or the Site, your conduct in connection with the Service or with other Users of the Service, or any violation of these Terms or of any law or the rights of any third party.
18. Termination
The LDSF may terminate your access, delete your profile, account, and any of Your Content that you have posted on or through the Service and/or prohibit you from using or accessing the Site or the Service (or any portion, aspect or feature of the Service) for any reason, or no reason, at any time in its sole discretion, with or without notice, including without limitation if it believes that you are under 13 and/or you have breached these Terms in any way whatsoever. Any User whose Joomsocial account has been deactivated or terminated will no longer be able or allowed to access The LDSF Community Page or such User's account on the LDSF Community Page.
19. Choice of law and exclusive forum
By using the Service, you agree that the laws in effect in the State of Maryland, without regard to its principles of conflict of laws, will govern these Terms and any dispute of any sort that might arise between you and the LDSF in connection with the Service or the Site. You agree not to commence or prosecute any action in connection therewith other than in the state and federal courts having jurisdiction over Maryland, Maryland, and you hereby consent, and waive all and any objections, to the exercise of exclusive jurisdiction over the parties by such courts and to venue in such courts.
20. Notices
The LDSF may provide you with notices, including those regarding changes to these Terms, by email, regular mail, or postings on the Site and/or the LDSF Community Page. Notice will be deemed given twenty-four (24) hours after email is sent, unless the LDSF has previously been notified that the email address is invalid. Notices not pertaining to any amendments to these Terms are deemed given two (2) days following the initial posting.
21. International use and export/import compliance
Recognizing the global nature of the Internet, you agree to comply with all local rules regarding online conduct and acceptable Content. Use of the Service and transfer, posting and uploading of software, technology, and other technical data via the Service may be subject to the export and import laws of the United States and other countries. You agree to comply with all applicable export and import laws and regulations and not to transfer, upload, or post via the Service any software, technology or other technical data in violation of U.S. or other applicable export or import laws.
22. No third-party beneficiaries
You agree that, except as otherwise expressly provided in these Terms, there shall be no third-party beneficiaries to these Terms.
23. Other
These Terms constitute the entire agreement between you and the LDSF regarding the use of the Service, superseding any prior agreements between you and the LDSF relating to your use of the Service. The failure of the LDSF to exercise or enforce any right or provision of these Terms shall not constitute a waiver of such right or provision in that or any other instance. If any provision of these Terms is held invalid, the remainder of these Terms shall continue in full force and effect. If any provision of these Terms shall be deemed unlawful, void or for any reason unenforceable, then that provision shall be deemed severable from these Terms and shall not affect the validity and enforceability of any remaining provisions.
24. Questions
If you have any questions about this Statement, you may contact The Marfan Foundation via phone, email or postal mail:
Email: webmaster@marfan.org
Phone: 1-800-8MARFAN
Mail: The Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050