Privacy policy & Terms of use

Privacy policy

At the same time that MyFSHD is committed to providing you information online, we recognize the importance of protecting your privacy and safeguarding your personal information. The statement below describes the general information-gathering and usage practices of our website.

When you visit our site, we may collect two types of information: nonpersonally identifiable information and personally identifiable information.

NONPERSONALLY IDENTIFIABLE INFORMATION
This information is used only for internal purposes to create summary statistics that allow us to assess the number of visitors, determine technical design specifications and help us make our site more useful to customers. It includes the following:

⦁ Name of the domain from which you access the internet.
⦁ Type of browser and operating system used to access our site.
⦁ Date and time you access our site.
⦁ Internet address of the website from which you linked directly to our site.

PERSONALLY IDENTIFIABLE INFORMATION
MyFSHD does not collect personally identifying information about individuals, except when specifically and knowingly provided by such individuals. Visitors to our site who do not want their personally identifiable information collected online are asked not to submit such information to MyFSHD. This information includes the following:

⦁ Name
⦁ Address
⦁ Telephone number
⦁ Email address

When a visitor requests an FSHD research testing kit via the MyFSHD website, MyFSHD will provide the testing site, the Peter and Takako Jones Lab in Reno, Nevada, USA, the personal information above in order for the testing site to provide the visitor the kit and to ascertain other required details.

When necessary, information provided to MyFSHD through this site will be encrypted using Secure Sockets Layer technology, the industry standard method for protecting Web communications. SSL encrypts or scrambles any information sent from your browser to the server you are connected to, making it virtually impossible to intercept and
tamper with the information while being transmitted.

MyFSHD will not sell or trade to third parties any personally identifiable information derived from any MyFSHD online service.

MyFSHD may disclose information to third parties to comply with statutory requirements or court orders or if you give us your written permission.

CHANGES TO OUR PRIVACY POLICY
MyFSHD reserves the right to change this privacy policy at any time. If we change our privacy policy, we will post those changes to this privacy statement.

Terms of use

Welcome to www.myfshd.org (the “website” or “site”). MyFSHD (“MyFSHD,” “the Company,” “we,” “us,” or “our”) operates and maintains this site for information and communication purposes. Please review the following Terms of Use that govern your use of our website. BY USING THIS WEBSITE, YOU WILL BE ACCEPTING THESE TERMS OF USE AND AGREE TO ABIDE AND BE BOUND BY THEM. PLEASE READ THEM CAREFULLY. IF THESE TERMS OF USE ARE NOT COMPLETELY ACCEPTABLE TO YOU, YOU MUST IMMEDIATELY TERMINATE YOUR USE OF THIS WEBSITE.

CHANGES TO TERMS
MyFSHD may, at any time, for any reason and without notice, make changes to (i) this website, including its look, feel, format and content, as well as (ii) the services as described in this website. Any modifications will take effect when posted to the website. Therefore, each time you access the website, you need to review the Terms of Use upon which
access and use of this website is conditioned. By your continuing use of the website after changes are posted, you will be deemed to have accepted such changes.

SCOPE OF USE
Unless otherwise noted, all information, including, but not limited to, all text, images, graphics, photographs, video clips, designs, icons, data and other materials on the website are copyrights, trademarks, service marks or other intellectual property or proprietary rights owned by MyFSHD or a third-party owner. You may use the content only for limited, internal, personal, noncommercial, informational purposes. You may not store, reverse engineer, or in any way exploit any of the content, in whole or in part, for any purpose. You may not use, reproduce, modify, transmit, distribute, or publicly display or operate this website without the prior written permission of MyFSHD. You may not use a part of this website on any other website without MyFSHD’s prior written consent. The systematic retrieval of data from the website also is prohibited. Under no circumstances will you obtain any rights, title or interest in the products, services, processes or technology described in the content. All of those rights are retained by MyFSHD and any third-party owners of those rights.

USER EMAIL
Email submissions over the internet may not be secure and are subject to the risk of interception by third parties. Please consider this fact before emailing any information. Also, please consult our Privacy Policy. You agree not to submit or transmit any emails or materials through the website that: (i) are defamatory, threatening, obscene or harassing; (ii) contain malware, a virus, worm, Trojan horse or any other harmful component; (iii) incorporate copyrighted or other proprietary material of any third party without that party’s permission; or (iv) otherwise violate any applicable laws. MyFSHD shall not be subject to any obligations of confidentiality regarding any information or materials that you submit online except as specified in these Terms of Use, or as set forth in any additional terms and conditions relating to specific products or services, or as otherwise specifically agreed or required by law. The commercial use, reproduction, transmission or distribution of any information, software or other material available through the website without the prior written consent of MyFSHD is strictly prohibited.

COPYRIGHTS AND TRADEMARKS
Except as expressly provided under the Scope of Use section, you may not use, reproduce, modify, transmit, distribute, or publicly display or operate this website without the prior written permission of MyFSHD. You may not use a part of this website on any other website without MyFSHD’s prior written consent.

LINKS
For your convenience, MyFSHD may link to websites or electronic services sponsored by third parties. However, MyFSHD does not control or endorse such third-party websites or their services or products offered reached by virtue of such links. MyFSHD is not responsible for the accuracy or reliability of any information, data, opinions, advice or statements contained within such third-party websites. The third parties, and not MyFSHD, are solely responsible for any advertisements, opinions, advice, statements, services, offers, data, information, content or other materials that such third parties express or make available.

Please read the terms and conditions or terms of use policies of any other company or website you may link to from our website. This Terms of Use applies only to MyFSHD’s website and the service MyFSHD offers. If you decide to access any of the third-party sites linked to this website, you do so at your own risk. MyFSHD reserves the right to terminate any link or linking program at any time. MyFSHD disclaims all warranties, express and implied, as to the accuracy, validity and legality or otherwise of any materials or information contained on such sites.

NO UNLAWFUL OR PROHIBITED USE
As a condition of your use of the website, you warrant to MyFSHD that you will not use the website for any purpose that is unlawful or prohibited by these Terms of Use and notices. You may not use the website in any manner that could damage, disable, overburden or impair the site or interfere with any other party’s use and enjoyment of the website.

You may not obtain or attempt to obtain any materials or information through any means not intentionally made available or provided for through the site.

SPAMMING
Gathering email addresses from LES through harvesting or automated means is prohibited.

NO WARRANTIES
THE WEBSITE, AND ANY CONTENT, ARE PROVIDED TO YOU ON AN “AS IS,” “AS AVAILABLE” BASIS WITHOUT WARRANTY OF ANY KIND WHETHER EXPRESS, STATUTORY OR IMPLIED, INCLUDING BUT NOT LIMITED TO ANY IMPLIED WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, QUIET ENJOYMENT, SYSTEMS
INTEGRATION, ACCURACY AND NON-INFRINGEMENT, ALL OF WHICH MYFSHD EXPRESSLY DISCLAIMS. MYFSHD DOES NOT ENDORSE AND MAKES NO WARRANTY AS TO THE ACCURACY, COMPLETENESS, CURRENCY OR RELIABILITY OF THE CONTENT, INCLUDING BUT NOT LIMITED TO ACCURACY OF SITE TRANSLATION USING THE THIRD-PARTY GTRANSLATE TOOL, AND MYFSHD WILL NOT BE LIABLE OR OTHERWISE RESPONSIBLE FOR ANY FAILURE OR DELAY IN UPDATING THE WEBSITE OR ANY CONTENT. WE HAVE NO DUTY TO UPDATE THE CONTENT OF THE WEBSITE. MYFSHD MAKES NO REPRESENTATIONS OR WARRANTIES THAT USE OF THE CONTENT WILL BE UNINTERRUPTED OR ERROR-FREE. YOU ARE RESPONSIBLE FOR ANY RESULTS OR OTHER CONSEQUENCES OF ACCESSING THE WEBSITE AND USING THE CONTENT, AND FOR TAKING ALL NECESSARY PRECAUTIONS TO ENSURE THAT ANY CONTENT YOU MAY ACCESS, DOWNLOAD OR OTHERWISE OBTAIN IS FREE OF VIRUSES OR ANY OTHER HARMFUL COMPONENTS. THIS WARRANTY DISCLAIMER MAY BE DIFFERENT IN CONNECTION WITH SPECIFIC PRODUCTS AND SERVICES OFFERED BY MYFSHD. SOME STATES DO NOT ALLOW THE DISCLAIMER OF IMPLIED WARRANTIES, SO THE FOREGOING DISCLAIMER MAY NOT APPLY TO YOU. YOU MAY ALSO HAVE OTHER LEGAL RIGHTS THAT VARY FROM JURISDICTION TO JURISDICTION.

LIMITATION OF LIABILITY
YOUR USE OF THE CONTENT IS AT YOUR OWN RISK. MYFSHD SPECIFICALLY DISCLAIMS ANY LIABILITY, WHETHER BASED IN CONTRACT, TORT, NEGLIGENCE, STRICT LIABILITY OR OTHERWISE, FOR ANY DIRECT, INDIRECT, INCIDENTAL, PUNITIVE, CONSEQUENTIAL OR SPECIAL DAMAGES ARISING OUT OF OR IN ANY WAY CONNECTED WITH ACCESS TO, USE OF OR RELIANCE ON THE CONTENT (EVEN IF MYFSHD HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES) OR THAT ARISE IN CONNECTION WITH MISTAKES OR OMISSIONS IN, OR DELAYS IN TRANSMISSION OF, INFORMATION TO OR FROM THE USER, ANY FAILURE OF PERFORMANCE, ERROR, OMISSION, INTERRUPTION, DELETION, DEFECT, DELAY IN OPERATION OR TRANSMISSION OR DELIVERY, COMPUTER VIRUS, COMMUNICATION LINE FAILURE, THEFT OR DESTRUCTION OR UNAUTHORIZED ACCESS TO, ALTERATION OF, OR USE OF RECORDS, PROGRAMS OR FILES, INTERRUPTIONS IN TELECOMMUNICATIONS CONNECTIONS TO THE WEBSITE OR VIRUSES, WHETHER CAUSED IN WHOLE OR IN PART BY NEGLIGENCE, ACTS OF GOD, TELECOMMUNICATIONS FAILURE, THEFT OR DESTRUCTION OF, OR UNAUTHORIZED ACCESS TO THE WEBSITE OR THE CONTENT. THIS LIMITATION OF LIABILITY MAY BE DIFFERENT IN CONNECTION WITH SPECIFIC PRODUCTS AND SERVICES OFFERED BY MYFSHD. SOME JURISDICTIONS DO NOT ALLOW THE LIMITATION OF LIABILITY, SO THIS LIMITATION MAY NOT APPLY TO YOU.

INDEMNITY
You agree to defend, indemnify and hold MyFSHD and its volunteers, licensors and suppliers harmless from and against all claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, your use of this website or the placement or transmission of any message, information, software or other materials or content on or through the website by you or related to any violation of these Terms of Use by you.

FRAMING, BOTS AND SPIDERS
The website may not be linked to in such a way that the pages of the website are displayed within a frame on a thirdparty website, or are otherwise displayed on a browser screen accompanied by advertising or other content not found on the website. The fact that a third party provides a link to the website will not in any way be or imply an endorsement, agency, joint venture or similar relationship between MyFSHD and any such third party. No user or third party is authorized to use any software, bots, spiders or other information-gathering devices or programming routines to monitor, copy or otherwise “mine” information displayed on the website for display on or use with any website or service.

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MyFSHD | Reno, Nevada, USA