Terms of Service

Published on Nov 2, 2017. Updated on Jun 24, 2023

Terms and Conditions of Use for Dysferlin Registry Website
The following terms constitute an agreement (the “Agreement”) between you and the Jain Foundation, Inc. (“Jain Foundation”), the operator of https://dysferlinregistry.jain-foundation.org/ (the “Dysferlin Registry Site”).

The Agreement governs your membership and use of the Dysferlin Registry Site as described below. By accessing or using the Dysferlin Registry Site, you agree to be bound by the terms of this Agreement.
Acceptable and Lawful Use of Dysferlin Registry Site
Members shall not post or upload any information or other content on the Dysferlin Registry Site that (a) is false, inaccurate or misleading; (b) is obscene or indecent; (c) infringes any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party; or (d) is defamatory, libelous, threatening, abusive, hateful, or contains pornography.
Members shall not interfere with other members’ use and enjoyment of the Dysferlin Registry Site (for example, by harassing, threatening, soliciting, overly promoting personal interests, or stalking another participant of a chat room, forum, seminar, or threaded message, including the use of expressions of bigotry, racism, hatred, or profanity). You may not bring outside disputes into the forums. Trolls, shills, and disruptive users are not welcome, and their posts will be removed.
Members may not use the Dysferlin Registry Site to conduct any activity that is illegal or violates the rights of others, provide instructional information about illegal activities, or promote physical harm or injury against any group or individual.
All members represent and warrant that the information they provided when registering as a member, and all information that they subsequently provide regarding themselves and their membership, is true and accurate and not misleading.
No Interference with Operation of Dysferlin Registry Site
You may not use any robot, spider, scraper, or other automated means to access the Dysferlin Registry Site or content or services provided on the Dysferlin Registry Site for any purposes. You may not post content on the Dysferlin Registry Site that contains any viruses, Trojan horses, worms, time bombs, spiders, or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information. You shall not attempt to make the Dysferlin Registry Site unavailable through denial-of-service attacks or similar means. You shall not use contact information provided by members, or collect information about our members, to facilitate the sending of unsolicited bulk communications such as SPAM or SPIM or allow others use of your membership account to take such actions.
Dysferlin Registry Site for Non-Commercial Use Only
The Dysferlin Registry Site, including the content and information contained in the Dysferlin Registry Site, is for the personal use of individual members only and may not be used in connection with any commercial endeavors. Organizations, companies, and/or businesses may not become members and should not use the Dysferlin Registry Site without express consent from Jain Foundation. Members with individual commercial interests may not solicit or overtly promote their products or services on the Dysferlin Registry Site.
The Dysferlin Registry Site uses cookies for certain purposes. Cookies are files that web servers send to web browsers and are stored by the web browsers. By using the Dysferlin Registry Site, you consent to our use of cookies as set forth in our Privacy Policy.
You agree that you have read, understood and accept the Dysferlin Registry Site's Privacy Policy. This policy explains the Dysferlin Registry Site's collection of personal and non-personal information from you when using the Dysferlin Registry Site and its use of and sharing of such personal and non-personal information.
This Site Does Not Provide Medical Advice
All of the material provided on the Dysferlin Registry Site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings, and any other material provided on the Dysferlin Registry Site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on this Dysferlin Registry Site.
If you think you may have a medical emergency, call your doctor or 911 immediately. Jain Foundation does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the Dysferlin Registry Site. Reliance on any information provided by Jain Foundation, by persons appearing on the Dysferlin Registry Site at the invitation of Jain Foundation, or by other members is solely at your own risk.
Research Studies, Clinical Trials, and Other Developments
It is the responsibility of all users to stay informed regarding clinical trials, research and other developments of interest. Although Jain Foundation will attempt to distribute relevant information regarding research studies and clinical trials to members, Jain Foundation assumes no responsibility for informing users regarding all such studies and trials, and makes no guaranty as to the completeness or accuracy of such information. Jain Foundation also assumes no responsibility for connecting any member with the provider of a research study or clinical trial, but will make every effort to inform users of upcoming research studies or clinical trials. Furthermore, Jain Foundation assumes no responsibility for ensuring the qualification of a member or participation of any member in any such study or trial. It is the responsibility of each member to contact the relevant investigators and pursue participation in a study or trial.
Posting and Use of Content on Dysferlin Registry Site
The Dysferlin Registry Site includes community areas, such as forums, where members may post messages, images, and other content (“User Submissions”). Members (or the author) own the copyright in the messages, images, and other content you post, but by posting such content within User Submissions you grant the Jain Foundation and our affiliates the right to use, copy, display, perform, distribute, translate, edit, and create derivative works of your User Submissions, subject to the terms of the Privacy Policy.
While the Dysferlin Registry Site is monitored periodically for topicality, Jain Foundation has no obligation to prescreen postings and is not responsible for their content. We encourage you to notify us of inappropriate or illegal content and we reserve the right to remove postings for any reason.
You agree not to disclose to any person or entity personally identifiable information about other members that you encounter while using this site (whether posted by a member or emailed to you by a member) without the express consent of such member. You may disclose information of a general nature (that could not identify the member who provided such information or whom such information is about) to third parties outside this site, subject to the above restriction on non-commercial use.
Claims of Copyright Infringement
If you are a copyright owner or an agent thereof and believe that any User Submission or other content at this Site infringes upon your copyright, you may submit a written notification pursuant to the Digital Millennium Copyright Act (“DMCA”) (see 17 U.S.C. 512(c)(3) for further information) by providing our Copyright Agent (listed below) with the following information: (i) an electronic or physical signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; (ii) a description of the copyrighted work claimed to have been infringed or if multiple copyrighted works are covered by a notification, a representative list of such works at our Site; (iii) a description of the location on the Site of the allegedly infringing material(s); (iv) your address, telephone number, and email address; (v) a written statement that you have a good faith belief that use of the material(s) in the manner complained of is not authorized by the copyright owner, its agent, or the law; and (vi) a written statement that the information in the notification is accurate, and under penalty of perjury, that you are authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.
If a User Submission that you submitted has been removed as a result of a notification as described above and you believe that such a User Submission or portion of a User Submission was posted lawfully, please contact us about our counter-notification procedure through which you can dispute the allegation and request re-posting of the User Submission content at issue.
Jain Foundation’s designated Copyright Agent for notice of claims of infringement is:
Jain Foundation Inc.
9706 Fourth Avenue NE
Suite 101
Seattle, WA 98115
Attn: Sarah Shira Emmons
Tel: (425) 882-1492
Email: patients@jain-foundation.org
You acknowledge that if you fail to comply with all of the notice requirements of the DMCA, your notice may not be valid.

Limited License
Jain Foundation grants members of the Dysferlin Registry Site a limited license to view on their computer, print, or download any content made available on the site for non-commercial, personal, and educational purposes only. You may not make any commercial use of such content, either alone or in or with any product which you distribute or copy or host such content on your or any other person’s web site or server. Nothing contained in this limited license shall be deemed as conferring any right in any copyright, trademark, trade name or other proprietary property of Jain Foundation or any other party who owns or has proprietary rights to the content, information and materials provided on the Dysferlin Registry Site.
Preservation of Intellectual Property Rights
All material on this site, including, but not limited to images, illustrations and multimedia materials, is protected by copyrights which are owned and controlled by Jain Foundation or by other parties that have licensed their material to Jain Foundation. Material from the Dysferlin Registry Site or from any other web site owned, operated, licensed or controlled by Jain Foundation may not be copied, reproduced, republished, uploaded, posted, transmitted, or distributed in any way. Modification of the materials or use of the materials for any other purpose is a violation of the copyrights and other proprietary rights held by the respective providers thereof. The use of any such material on any other web site, ftp server or network environment is prohibited.
Member Password and Login Identity
You must maintain the confidentiality of your member password and login, and are fully responsible for all activities that occur under your password or account with or without your knowledge. If you knowingly provide your login and password information to another person, your membership privileges may be suspended temporarily or terminated. You agree to immediately notify Jain Foundation of any unauthorized use of your membership password or login or any other breach of security.
Always use the same user name and do not impersonate others. Do not create multiple user names. User names may not reference your business, commercial web sites or trademarked names.
International Users
Jain Foundation makes no claims that information on the Dysferlin Registry Site is appropriate or may be downloaded outside of the United States. Personal information (“Information”) that is submitted to this site will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law, the E.U. General Data Privacy Regulation (the “GDPR”), and our Privacy Policy. If you are a non-U.S. user, you acknowledge and agree that Jain Foundation may collect and use your Information in accordance with such laws and policy, and that your information may be stored on servers located outside your resident jurisdiction. U.S. law, the GDPR, and our Privacy Policy might 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 site.

Links to Other Web Sites
The Dysferlin Registry Site may contain links to other websites that are not under the control of Jain Foundation. The inclusion of any link does not imply endorsement by Jain Foundation of such websites and Jain Foundation is not responsible for the content of such linked websites, as more fully discussed in our Privacy Policy.
Membership Suspension or Termination
You agree that Jain Foundation may, with or without cause, immediately suspend or terminate your Dysferlin Registry Site membership or limit or terminate your access to the Dysferlin Registry Site without prior notice. Without limiting the foregoing, the following may lead to a suspension or termination of a member's membership and use of the Dysferlin Registry Site: (a) breaches or violations of this Agreement or other incorporated agreements or guidelines, (b) requests by law enforcement or other government agencies, (c) a request by you (self-initiated membership cancellation), (d) unexpected technical issues or problems, and (e) extended periods of inactivity.
Modifications to this Agreement
We reserve the right to modify this Agreement at any time, and without prior notice, by posting amended terms on this Dysferlin Registry Site. We encourage you to review this Agreement periodically for any updates or changes, which will have an update effective date.
Membership with the Dysferlin Registry Site is currently free. Jain Foundation Inc. reserves the right to from time to time change the terms of this Agreement and charge for membership and/or to provide additional optional services for a fee.
Disclaimer of Warranties
The Dysferlin Registry Site and the content and services made available on the Dysferlin Registry Site are provided on an “as is” and “as available” basis. Jain Foundation does not make and disclaims all express and implied warranties and representations, including, but not limited to, any implied warranty of fitness for a particular purpose, with regard to the Dysferlin Registry Site, the Dysferlin Registry Site content, or any advice or services provided through the Dysferlin Registry Site to the extent permitted by law. Jain Foundation does not warrant that access to the Dysferlin Registry Site or its content or services will be uninterrupted or error-free or that defects in the Dysferlin Registry Site will be corrected.
The advice, recommendations, information, and conclusions posted or emailed by other members of the Dysferlin Registry Site are not in any way vetted, approved or endorsed by Jain Foundation, and you use such information at your own risk.
Limitation of Liability
Under no circumstances shall Jain Foundation, its partners, contributors, agents, employees, directors, or affiliates be liable for any indirect, incidental, special, or consequential damages (even if it has been advised of the possibility of such damages) due to your use of this Dysferlin Registry Site or due to your reliance on any of the content contained or the services provided on the Dysferlin Registry Site.
You agree to indemnify and hold harmless Jain Foundation, its officers, employees, agents, subsidiaries, affiliates and other partners, from and against any claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, your violation of this Agreement.
Member Notices
If you register as a member, you agree that Jain Foundation may send notices to you by email at the email address you provide when registering to become a member (or which you later update using the functionality of the Dysferlin Registry Site).
Governing Law and Venue
This agreement shall be governed by the laws of the State of Washington and the applicable federal laws of the United States of America. All disputes arising under, or in any way connected with membership in or use of the Dysferlin Registry Site, shall be litigated exclusively in the state and federal courts residing in the State of Washington, and in no other court or jurisdiction. You hereby submit to the jurisdiction of the state and federal courts sitting in the State of Washington.
Miscellaneous Terms
Jain Foundation, the Jain Foundation logo and Dysferlin Registry are trademarks of Jain Foundation. You agree not to display or use these trademarks in any manner without Jain Foundation's prior, written permission.
Jain Foundation may assign this agreement at any time to a successor to its operations. You may not assign or transfer this agreement.
If any provision of this Agreement is held to be unenforceable for any reason, the remaining provisions will be unaffected and remain in full force and effect.
For any questions or comments, or to report violations of this agreement, let us know, or contact us at:
Jain Foundation Inc.
9706 Fourth Avenue NE
Suite 101
Seattle, WA 98115
Attn: Sarah Shira Emmons
Tel: (425) 882-1492
Email: patients@jain-foundation.org