Jain Foundation Website Terms and Conditions of Use


Jain Foundation Website Terms and Conditions of Use

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The following terms constitute an agreement (the “Agreement”) between you and the Jain Foundation, Inc. (“Jain Foundation”), the operator of www. jain-foundation.org (the “Website”).  This Agreement governs your use of the Website as described below. By accessing or using the Website, you agree to be bound by the terms of this Agreement.

Information Relevant to Persons with Dysferlinopathy

  1. ALDA. We have developed a free online tool to help guide physicians toward the most probable diagnosis of patients whom they believe have some form or muscular dystrophy, which we call ALDA, short for Automated LGMD Diagnostic Assistant.  This tool, which you can find on the Website https://www.jain-foundation.org/patients-clinicians/for-healthcare-professionals/automated-lgmd-diagnostic-assistant-alda/, or at https://jain-foundation.org/alda/, predicts the most likely type(s) of neuromuscular diseases, including LGMDs, if applicable, that a patient might have based on clinical presentation and laboratory findings.  Please read the FAQ for ALDA before using it, which can be found at https://jain-foundation.org/alda/content/faq.

If you are a patient interested in personally investigating which type of neuromuscular disease your symptoms most closely match, including whether your symptoms indicate a form of LGMD, the Jain Foundation can facilitate an interview to gather more information, and can run the ALDA program for you.  The Jain Foundation can be reached at 425-882-1492 or patients@jain-foundation.org. Alternatively, please contact your physician to use ALDA on your behalf.  Also, please read our privacy policy at [https://www.jain-foundation.org/privacy-policy/] before using ALDA.

  1. Dysferlin Registry. This Agreement only applies to pages on this Website, including ALDA.  If you are visiting here to apply for membership in our patient registry, which we call the “Dysferlin Registry,” please note that the website for the Dysferlin Registry has separate Terms and Conditions of Use.  As a condition to becoming a member of the Dysferlin Registry, you will be required to read and consent to them, which you can find here: https://dysferlinregistry.jain-foundation.org/terms-and-conditions.


No Interference with Operation of Website

You may not use any robot, spider, scraper, or other automated means to access the Website or content or services provided on the Website for any purposes. You may not post content on the Website 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 Website unavailable through denial-of-service attacks or similar means. You shall not use contact information provided by users, or collect information about users, to facilitate the sending of unsolicited bulk communications such as SPAM or SPIM.

Website for Non-Commercial Use Only

The Website, including the content and information contained herein, is for the personal use of visitors only and may not be used in connection with any commercial endeavors.


The Website 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 Website, you consent to our use of cookies as set forth in our Privacy Policy.  You agree that you have read, understood and accept the Website’s Privacy Policy, which is at [https://www.jain-foundation.org/privacy-policy/]. This policy explains the Website’s collection of personal and non-personal information from you when using the Website 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 Website, such as text, treatments, dosages, outcomes, charts, graphics, photographs, images, advice, messages, and any other material provided on the Website 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 Website.

If you think you may have a medical emergency, call your doctor or 911 immediately. We do not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the Website. Reliance on any information provided by us, by persons appearing on the Website at our invitation, or by other visitors 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 we will attempt to distribute relevant information regarding research studies and clinical trials to members, we assume no responsibility for informing users regarding all such studies and trials, and make no guarantee as to the completeness or accuracy of such information. We also assume no responsibility for connecting any individual 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, we assume no responsibility for ensuring the qualification of any individual or participation of any individual in any such study or trial. It is the responsibility of each individual to contact the relevant investigators and pursue participation in a study or trial.

Claims of Copyright Infringement

If you are a copyright owner or an agent thereof and believe that any content at this Website 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 Website 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.

Jain Foundation’s designated Copyright Agent for notice of claims of infringement is:

Jain Foundation Inc.
9706 4th Ave NE, Suite 101
Seattle, WA 98115
Tel: (425) 882-1492
Email: admin@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

We grant users of the Website 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 Website.

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 Website 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.

International Users

Jain Foundation makes no claims that information on the Website 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 Website 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.

 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 Website. We encourage you to review this Agreement periodically for any updates or changes, which will have an update effective date.

Acceptable and Lawful Use of Website

You shall not post or upload any information or other content on the Website 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.

You shall not interfere with others’ use and enjoyment of the Website.  You may not use the Website 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.  You represent and warrant that the information you provide through the Website is true and accurate and not misleading.

 Disclaimer of Warranties

The Website and the content and services made available on the Website 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 Website, the Website content, or any advice or services provided through the Website to the extent permitted by law. Jain Foundation does not warrant that access to the Website or its content or services will be uninterrupted or error-free or that defects in the Website will be corrected.

The advice, recommendations, information, and conclusions posted or emailed by other members of the Website 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 Website or due to your reliance on any of the content contained or the services provided on the Website.


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.

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 Website, 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, ALDA, 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
Tel: (425) 882-1492
Email: admin@jain-foundation.org