Date of Last Revision: March 24, 2009 Welcome to the National Marfan Foundation (“us”, “we”, or "NMF") website (the "Site"), which is designed to provide you with information about the Marfan syndrome and related connective tissue disorders, 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 NMF and they govern your relationship with NMF 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 the Marfan syndrome and related connective tissue disorders, to locate a clinic or specialist familiar with the syndrome and the related disorders, to become a NMF volunteer, to create and update a profile, to connect and stay in touch with other Users, to shop 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.          NMFconnect

NMFconnect is the social network service of NMF, accessible through the Site (“NMFconnect”).  NMFconnect is hosted and runs on a platform provided by Ning, Inc. ("Ning") and uses Ning's authentication system.  You cannot access NMFconnect without first registering with Ning to obtain a Ning ID, by providing your name, e-mail address, date of birth and password and by accepting Ning's terms of service, guidelines and privacy policy.  Please note that when using NMFconnect you are bound by the Ning's terms of service, guidelines and privacy policy and that these Terms are not intended in any way to supersede, amend, or otherwise affect Ning's terms of service, guidelines and privacy policy and/or their applicability to you.  Please keep your Ning ID and password secure and private, since the same ID and password provide you access to your NMFconnect account.All the data you submit during the registration process to NMFconnect as well as the information you post through your account or otherwise disclose in accessing and using NMFconnect will be shared with Ning and will be used by us to provide you with the Service and to send you updates in accordance with our Privacy Statement.


4.          NMF Store

NMF Store is the shopping service of NMF, accessible through the Site ("NMF Store"), where you can purchase educational resources, medical publications, products that support NMF, and various other products (collectively, the "Products") from our online catalog.  NMF sells the Products only to Users who can legally make purchases with a credit card.  If you are under 18, you may make purchases on NMF Store only with the involvement of a parent or guardian.  NMF reserves the right to refuse or cancel orders, at any time in its sole discretion.

Payment Methods.

We accept Visa, MasterCard, American Express, and Discover credit cards. By submitting an order through the NMF Store, you authorize NMF, or its designated payment processor, to charge the account you specify for the purchase amount.  All payments are to be made in United States Dollars.  When you provide your credit card number to NMF, you authorize us to store your credit card number and related payment information.

Delivery.

Any Products you purchase through the NMF Store will be shipped FOB Shipping Point and title to the Products passes to you upon shipment.

Products Descriptions And Availability.

We attempt to be as accurate as possible and eliminate errors on NMF Site.  However we do not warrant that any Products, description, photograph, pricing or other information is accurate, complete, reliable, current, or error-free.  In the event of an error, whether on the NMF Site, in an order confirmation, in processing an order, delivering any Products or otherwise, we reserve the right to correct such error and revise your order accordingly (including charging the correct price) or to cancel the order and refund any amount charged.NMF may revise, discontinue or modify Products at any time without prior notice to customers, and Products may become unavailable without notice.  NMF shall have no liability of any kind if a product or service that has been ordered by you is unavailable.

Taxes.

You will be responsible for any applicable sales or use taxes, duties, or other governmental taxes or fees payable in connection with your purchase of the Products.  If you do not pay such taxes, duties or fees on a transaction, you will be responsible for such taxes, duties or fees in the event that they are later determined to be payable on such sale, and NMF reserves the right to collect such taxes, duties or fees from you at any time.

Refunds.

All purchased Products may be returned to us for a refund of your purchase price when you notify us within 30 days of receipt of your order.  We do not accept returns after this 30-day period.  You are responsible for paying shipping back to the designated location for returned items.  You must call first for a return authorization number, and no merchandise can be returned without a written authorization number.  Items must be unopened, in new condition, and returned in original shipping containers.  All merchandise must be inspected by customer upon delivery.  NMF is not responsible for damages incurred during shipping.  All sales are final, non-cancelable and nonrefundable except as expressly set forth in these Terms or as otherwise determined by NMF in its sole discretion.


5.          Online Donations

The Site allows you to make online donations to NMF using Visa, MasterCard, American Express, and Discover credit cards. Your donations will help support the NMF’s vital programs of education, research and support for individuals and families with Marfan syndrome and related disorders. The NMF is a 501 (c)(3) non-profit organization and your donation is tax-deductible to the extent permitted under the laws applicable to such organizations.


6.          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 NMF or posted by Users through the Service or on the Site (the "Content") is the exclusive property of NMF or the Users who posted it, or their licensors.  All Content that you post on NMFconnect and that you make available through the Service (“Your Content”) remains your property and NMF 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 NMF 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 NMF 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 NMF is a voluntary health organization and is not engaged in rendering medical advice or recommendations on diagnosis or treatment of the Marfan syndrome, other related connective tissue disorders OR OTHERWISE.  The Content provided is designed for educational and informational purposes only, in furtherance of NMF's mission.  The Marfan 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.  

7.          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 NMF 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 NMF may, but is not obligated to, remove (with or without notice) any of Your Content, for any reason or no reason, in NMF'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. 

8.          Modification of the Service

NMF 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 NMF shall not be liable to you or to any third party for any modification, suspension or discontinuance of the Service (or any part thereof).


9.          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 NMF, 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 NMF 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.

10.          Privacy

We care about the privacy of our Users. Click here to view our Privacy Policy.

11.          Trademarks

NMF, NMFconnect and other NMF's graphics, logos, designs, scripts, page headers, screen icons and service names are service marks, trademarks or trade dress of NMF in the U.S. and/or other countries.  NMF'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 NMF. 

12.          Copyright Infringement Complaints; Digital Millennium Copyright Act Compliance

NMF respects the intellectual property of others and requires that Users do the same.  NMF 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 NMFconnect infringes your copyrights, then you may submit a notification pursuant to the DMCA by providing NMF'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 NMFconnect 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 NMF 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 NMF 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 NMF will send a copy of such notices to the individual that uploaded the allegedly infringing content.  Additionally, please note that NMF 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 NMF 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 

NMF's Designated Copyright Agent to receive notifications and counter-notifications of claimed infringement can be reached as follows:  

Attention: Copyright Agent
National Marfan Foundation
22 Manhasset Ave
Port Washington, NY 11050
Email: copyrightagent@marfan.org 

For clarity, only DMCA notices should go to NMF'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. 

13.          Repeat Infringer Policy

In accordance with the DMCA and other applicable laws, NMF has adopted a policy of terminating, in appropriate circumstances and at NMF’s sole discretion, Users who are deemed to be repeat infringers.  NMF 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. 

14.          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. 

15.          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. 

16.          DISCLAIMERS

YOU EXPRESSLY UNDERSTAND AND AGREE THAT THE SITE, THE SERVICE AND THE PRODUCTS ARE PROVIDED ON AN “AS-IS” AND "AS-AVAILABLE" BASIS AND THAT NMF EXPRESSLY DISCLAIMS ANY AND ALL WARRANTIES, WHETHER EXPRESS OR IMPLIED INCLUDING, WITHOUT LIMITATION, IMPLIED WARRANTIES OF TITLE, MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE OR NON-INFRINGEMENT. NMF CANNOT GUARANTEE AND DOES NOT PROMISE ANY SPECIFIC RESULTS FROM THE USE OF THE SERVICE OR THE PRODUCTS.  NMF DOES NOT REPRESENT OR WARRANT, AND EXPRESSLY DISCLAIMS ANY REPRESENTATIONS AND WARRANTIES, THAT CONTENT ON THE SITE OR PROVIDED THROUGH THE SERVICE OR PRODUCTS ARE ACCURATE, COMPLETE, RELIABLE, CURRENT OR ERROR-FREE OR THAT THE SITE AND THE SERVICE ARE FREE OF VIRUSES OR OTHER HARMFUL COMPONENTS.  THEREFORE, YOU SHOULD EXERCISE CAUTION IN THE USE OF THE PRODUCTS, THE SITE AND THE SERVICE AND DOWNLOADING OF ANY CONTENT AND USE INDUSTRY-RECOGNIZED SOFTWARE TO DETECT AND REMOVE VIRUSES AND OTHER HARMFUL SOFTWARE.   WITHOUT LIMITING THE FOREGOING, YOU UNDERSTAND AND AGREE THAT YOU DOWNLOAD OR OTHERWISE OBTAIN OR ACCESS CONTENT, MATERIAL, DATA OR SOFTWARE FROM OR THROUGH THE SERVICE OR THE SITE AT YOUR OWN DISCRETION AND RISK AND THAT YOU WILL BE SOLELY RESPONSIBLE FOR YOUR USE THEREOF AND ANY DAMAGES TO YOU, TO YOUR DEVICES OR COMPUTER SYSTEMS, LOSS OF DATA OR OTHER HARM OF ANY KIND THAT MAY RESULT.  

NO ADVICE OR INFORMATION, WHETHER ORAL OR WRITTEN, OBTAINED BY YOU THROUGH OR FROM THE SERVICE, THE SITE AND THE PRODUCTS SHALL CREATE ANY WARRANTY.