TERMS OF USE

HUWE1.org maintains its website located at www.huwe1.org and its associated and/or successor URLs, websites, technical and functional capability, webpages, User Submissions, Licensed Content and other materials (collectively the "Site") to provide to its visitors ("you" or "your") information about its mission and to give you access to disease-specific information. These Terms of Use are a binding contract and we encourage you to read them. By accessing,or otherwise using the Site or any of its Licensed Content, you unconditionally agree to be bound by these Terms of Use and all applicable laws whether or not you have read them.

Users agree to comply with the Terms and Conditions as stated herein and on this website.

1. Generally

You may browse the Site to learn more about HUWE1.org, information it provides. We permit you to use this and all other material posted on the Site or otherwise approved by it (collectively, "Licensed Content") for informational purposes only and solely as set forth in the Site and these Terms of Use. You may view the Licensed Content for your own personal use but not for resale or other commercial exploitation and not for use other than as provided in these Terms of Use. Any other use of Licensed Content without HUWE1.org’s prior written approval is strictly prohibited.

2. HUWE1.org information

The information collected on this site is purely based on information that we have gathered as parents of a child with a HUWE1 mutation. It is based on what we have found in journal publications and in consultation with our son's geneticist. However, we are not geneticists or medical professionals and the information here should not be taken as medical guidance or as the most up-to-date information about HUWE1 gene mutations - you should always consult a medical professional for treatments and genetic counselling advice. We are not a registered charity or an official body. The information on this site is purely our own personal views and understanding of HUWE1 and should not be taken as medical information. We are not a medical provider or health care facility and can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individual medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.

HUWE1.org cannot ensure or guarantee and does not warrant that its Licensed Content or that the recommendations, or other information provided is useful, safe, unobjectionable, decent, inoffensive, thorough, complete, accurate, up-to-date, or will meet your particular needs or requirements. You waive any legal or equitable rights or remedies you have or may have against HUWE1.org with respect thereto and agree to indemnify and hold the site author’s harmless to the fullest extent allowed by law regarding all matters in connection with your use of the Site.

3. Privacy and Data Security

HUWE1.org values its relationship with its community and uses commercially available technology to safeguard any personal information collected through the Site. Unfortunately, the Internet is an open medium and no data transmission through the Internet is completely secure. You transmit personal information of any nature or sort at your own risk. HUWE1.org does not guarantee or warranty the security of information you transmit to, through or from the Site. Once received, your personal information is stored on secure servers. This section describes our overall practices.

In general, you may visit the Site without telling HUWE1.org who you are or revealing personal information about yourself. However, HUWE1.org, its members and collaborative organisations as well as companies providing services to or on behalf of the HUWE1.ORG (such as, without limitation, companies assisting with fundraising or marketing, surveys, database and other technology management and the like) may use various technologies, such as cookies and web beacons (1x1 pixels), to collect non-personally identifiable information discernible as a result of your visit. As technology evolves, we may gather information through other means as well. This may include, without limitation, a visitor's IP address, cookie information, web pages requested or viewed, date, time and domain type and responses to surveys. Information gleaned from your browser is automatically received and recorded on server logs. You may set your browser either to notify you when you receive a cookie or to refuse to accept cookies. They may also use and disclose non-personally identifiable data derived for scheduling and optimisation of content delivery and, of course, if required to do so by law. IP addresses also may be collected for system administration to include in outgoing mail message headers.

Personal information is information you provide in any form that personally identifies you, such as your name, address, e-mail address, telephone number, and that is not otherwise publicly available. Personally identifiable information you voluntarily provide is not collected or stored and email communications with us are purely personal between you and the site owners.

HUWE1.org may use any information gained through the Site for any legal purpose.

Except for any personally identifiable information HUWE1.org may collect from you under the guidelines established in this Privacy Section, any articles, comments, blogs, discussions, data, images, sounds, text, ideas, suggestions or enhancements, as well as anything embedded therein, material, information or other communication you transmit, submit, upload or post to the Site,or via email to HUWE1.org (collectively, "User Submissions") are non-confidential and non proprietary. HUWE1.org has no obligation to preserve the confidentiality of or refrain from disclosing any User Submissions, has no liability for and will be free to copy, disclose, distribute, incorporate and otherwise use all or any part of any User Submissions for any and all commercial or non-commercial purposes.

If HUWE1.org were to merge with another not-for-profit or if it were to cease operations, your information may be transferred to the surviving or acquiring entity and will then be subject to that entity's privacy policy. Your personal information may be disclosed if there is reason to believe that disclosure is necessary to identify, contact or bring legal action to enforce any of its rights, including against you or a third party, for non-payment of any material available for purchase through the Site, violation of any agreement, and to prevent injury to or interference with HUWE1.org’s rights or property, the rights or property of other Site users or anyone else that could be harmed by such activities. HUWE1.org may disclose or access account information when HUWE1.org believes, in good faith, that the law requires it, for administrative and other purposes deemed necessary to maintain, service and improve the Site and HUWE1.org's services and to protect its rights or property. By accessing and using the Site, you agree that information you have provided may be used and disclosed as described above or as these Terms of Use may be modified from time to time.

4. User Conduct

In general, HUWE1.org expects visitors to interact with the the Site in a truthful, courteous manner and in compliance with all laws.

Vandalism, obscene or abusive language, pornography, harassment, threats, or abuse of any nature or form on the Site, including via e-mail, post or other transmission is strictly prohibited. Impersonation of others or misrepresenting your affiliation with HUWE1.ORG or another is prohibited. You may not upload to, distribute or otherwise publish through the Site any material that you know is or reasonably believe to be false or misleading, contains viruses or malicious code, is defamatory, vulgar, obscene, threatening, libellous, infringes upon another's proprietary rights, is invasive of another's privacy or publicity rights, is hateful, racially or ethnically objectionable or which may constitute or encourage a criminal offense, violate any law or another's rights or otherwise give rise to liability.

You agree not to forge headers or otherwise manipulate identifiers in order to disguise the origin of anything transmitted through the Site, disclose proprietary or confidential information or otherwise infringe another's patent, trademark, trade secret, copyright or other proprietary right (collectively "Rights"). You may not upload chain letters, pyramid schemes, solicitations, or commercial material of any sort to the Site, use the Site to solicit others, advertise or promote anything. Framing, in-line linking or other means of associating the Site, Marks or Licensed Content with another or with any material, link or information not originating with HUWE1.ORG is expressly prohibited.

You agree not to use or launch any automated system, including without limitation, "robots," "spiders," or "offline readers," that accesses the Site in a manner that sends more request messages to HUWE1.org services in a given period of time than a human can reasonably produce in the same period by using a conventional on-line web browser. Nevertheless, HUWE1.org grants operators of public search engines permission to use spiders to copy materials from the Site for the sole purpose of and solely to the extent necessary to create publicly available searchable indices of the Licensed Content, but not caches or archives of Licensed Content. HUWE1.org reserves the right to revoke these exceptions either generally on in specific cases. You agree not to collect or harvest any personally identifiable information from the Site or use the communication systems provided by the Site (e.g., comments, email) for any commercial solicitation purposes.

Any attempt to interfere with or disrupt the Site, its servers, networks, Software, equipment or database connected to the Site, whether via malicious code, files or other means, or attempts to disassemble, reverse engineer or decompile any Software, circumvent security features such as passwords, or take any action that compromises the privacy or security of the Site, users or other visitors is strictly prohibited.

Although HUWE1.org will not, and has no obligation to, monitor User Submissions, it has the right not to post or publish Licensed Content and/or User Submissions and to delete, remove or edit any Licensed Content and/or User Submissions at any time in its sole discretion without notice or liability of any notice or sort. Under no circumstances is or will HUWE1.org or its affiliates be liable in any way for any User Submissions, your or another's use of the Site or any Licensed Content, including but not limited to any errors or omissions in any Licensed Content, or for loss or damage of any kind incurred as a result of the use of any Licensed Content via the Site.

5. Indemnity

You agree to indemnify, defend, release and hold HUWE1.org, its authors, officers, directors, members, suppliers, service providers, co-branders or other partners, agents and employees, and those of its affiliates, harmless from all claims, demand, damages, fees and costs of any nature, including costs of investigation and reasonable fees of solicitors and other professionals, due to or arising out the posting or use of any User Submission, anything else you transmit through or upload to the Site, your use of the Site, your connection to the Site, your violation of these Terms of Use, or your violation of any Rights. In the event you provide registration or other information that is untrue, inaccurate, fraudulent, or out of date, you agree to indemnify HUWE1.org for and hold it harmless from and against any and all liability, damages, loss or expense (including reasonable fees of solicitors and other professionals) of any nature or sort it may incur arising from or related to any claim, demand, action or proceeding alleged or initiated against HUWE1.org by any third party based upon the information you provide, any User Submissions or use of the Site.

6. Modifications/Termination

From time to time HUWE1.org may modify the Licensed Content, the Site's functionality, operation or capability, disable certain features or bar access to, suspend or discontinue its provision of the Site. HUWE1.org also reserves the right at any time and from time to time to modify these Terms of Use, (or any part thereof) with or without notice. Please review these Terms of Use regularly. HUWE1.org, in its sole discretion, may suspend or terminate your access or use for any reason, but especially if it believes that you have violated or acted inconsistently with the law or spirit of these Terms of Use. You agree that any suspension or termination may be effected without prior notice or liability to you.

7. Links

Links are fundamental to the nature of the Internet in general and this Site. When you click a hyperlink to other internet websites or resources accessible through the Site, you leave the Site. HUWE1.org has no control over such sites, their content and resources or the business practices or policies of operators of such sites. The privacy terms set forth in these Terms of Use do not apply to the practices of any companies or individuals operating the linked sites. Please use caution and review the privacy policies of any sites that you visit to learn more about their information-gathering practices. HUWE1.org expressly disclaims all responsibility or liability for the availability or accuracy of such external sites or resources or the content thereon, does not endorse and is not responsible or liable for any advertising, products, advice, research, data or other materials on or available from such sites or resources. The inclusion of any link on the Site does not imply that HUWE1.org endorses the linked site. Your use of any links is at your own risk. You further acknowledge and agree that HUWE1.org shall not be responsible or liable, directly or indirectly, for any harm, damage or loss caused or alleged to be caused by or in connection with your use of or reliance on any goods, services, advice or materials available on or through any such link, site or resource.

8. HUWE1.org's Proprietary Rights

Everything you see or read on the Site, including the collection, compilation, assembly and arrangement of Licensed Content is protected by all UK and EU copyright and trademark laws, and may not be used except as provided in these Terms of Use without the express written permission of HUWE1.org. The Site, including any necessary software, code or other technology used in connection with the Site ("Software"), Licensed Content including all images, photography, graphics, artwork, text, and other information and material found on the Site, all Marks and other intellectual property or other Rights relating thereto and all information and data collected through the Site are owned by and proprietary to HUWE1.org. All trademarks, logos, trade names, trade dress, product and service marks, individually or combined with one another (collectively the "Marks") and whether or not registered, are proprietary to HUWE1.org or other third party owners who have granted it the right and license to use its marks ("Third Party Marks"). You may not use or display the Marks or Third Party Marks in any manner without the prior written consent of the applicable owner. This includes use of the Site address or Marks in page text, as key words, meta tags or any other "hidden text." You recognize and acknowledge that your submission of any suggestions, ideas, images, sounds, enhancements, data or other material is done on a non-confidential, non-proprietary basis, without expectation of compensation or attribution of any sort. HUWE1.org may use any such material in any manner for any reason without your consent, fee or obligation to account to you in any way, and, unless you and HUWE1.org agree otherwise in writing, HUWE1.org is and shall be the sole and exclusive owner.

9. Disclaimers and Limitations of Liability

HUWE1.org does not offer legal or medical advice and nothing contained in the Licensed Content or on the Site should be construed as offering such advice. HUWE1.org disclaims all representations or warranties about the accuracy or completeness of the Site or Licensed Content.

YOU EXPRESSLY UNDERSTAND AND AGREE THAT:

(a) YOUR USE OF THE SITE, LICENSED CONTENT, ANY USER SUBMISSIONS AND ANY PARTICULAR FEATURE IS AT YOUR SOLE RISK. THE SITE IS PROVIDED ON AN "AS IS" AND "AS AVAILABLE" BASIS. HUWE1.ORG EXPRESSLY DISCLAIMS ALL WARRANTIES OF ANY KIND, WHETHER EXPRESS OR IMPLIED, INCLUDING, BUT NOT LIMITED TO THE IMPLIED WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, WARRANTIES ARISING FROM COURSE OF DEALING OR COURSE OF PERFORMANCE, FREEDOM FROM MALICIOUS CODE, NON-INFRINGEMENT AND NONINTERFERENCE WITH YOUR USE OF ALL OR ANY PART OF THE SITE.

(b) HUWE1.ORG MAKES NO WARRANTY (i) THAT THE SITE WILL MEET YOUR REQUIREMENTS, (ii) THAT ACCESS TO THE SITE WILL BE UNINTERRUPTED OR TIMELY, THAT IT IS SECURE, OR THAT LICENSED CONTENT IS ACCURATE OR ERROR-FREE, (iii) THAT THE LICENSED CONTENT, USER SUBMISSIONS OR RESULTS OBTAINED FROM USE OF THE SITE WILL BE USEFUL, COMPLETE, CURRENT, ACCURATE OR RELIABLE, WILL MEET YOUR NEEDS OR EXPECTATIONS.

(c) ANY LICENSED CONTENT AND/OR USER SUBMISSION DOWNLOADED OR OTHERWISE OBTAINED THROUGH THE USE OF THE SITE IS DONE AT YOUR OWN DISCRETION AND RISK AND THAT YOU WILL BE SOLELY RESPONSIBLE FOR ANY RESULTING DAMAGE.

(d) NO ADVICE OR INFORMATION, WHETHER ORAL OR WRITTEN, OBTAINED BY YOU FROM HUWE1.ORG, ANY WEBSITE ACCESSED VIA A LINK ON THE SITE OR THROUGH OR FROM USER SUBMISSIONS OR LICENSED CONTENT SHALL CREATE ANY WARRANTY NOT EXPRESSLY STATED IN THESE TERMS OF USE.

YOU EXPRESSLY UNDERSTAND AND AGREE THAT HUWE1.ORG SHALL NOT BE LIABLE FOR ANY LOSS, HARM OR DAMAGES INCURRED WHETHER DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL OR EXEMPLARY DAMAGES, INCLUDING BUT NOT LIMITED TO DAMAGES FOR LOSS OF PROFITS, GOODWILL, USE, DATA OR OTHER INTANGIBLE LOSSES (EVEN IF HUWE1.ORG HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES), WHETHER ARISING OUT OF OR IN CONNECTION WITH THE USE OR THE INABILITY TO USE, ACCURACY OF THE INFORMATION, LICENSED CONTENT, USER SUBMISSIONS, LINKED WEBSITES OR OTHER MATERIAL SHOWN OR AVAILABLE FROM THE SITE OR ANY OTHER MATTER RELATING TO YOUR ACCESS TO OR USE OF THE SITE. IN ANY CASE, HUWE1.ORG'S SOLE LIABILITY, AND THAT OF ITS LICENSORS, SUPPLIERS AND PARTNERS, IS LIMITED TO FIVE POUNDS £5.00. YOUR LEGAL RIGHTS WITH RESPECT TO THESE DISCLAIMERS AND WAIVERS MAY VARY FROM JURISDICTION TO JURISDICTION. WITHOUT INTENDING TO LIMIT THE FOREGOING, YOU MUST BRING ANY CLAIMS YOU MAY HAVE AGAINST HUWE1.ORG WITHIN SIX (6) MONTHS OF THE DATE THE CLAIM AROSE OR BE FOREVER BARRED. THESE LIMITATIONS SHALL APPLY NOTWITHSTANDING ANY FAILURE OF ESSENTIAL PURPOSE OF ANY LIMITED REMEDY.

10. General Information

These Terms of Use and any other agreements, whether or not referenced herein, constitute the entire agreement between you and HUWE1.ORG with regard to and shall govern all purchases. Your activities and use of the Site supersede any prior agreements between you and HUWE1.ORG. These Terms of Use, your use of the Site and any other agreement with and the relationship between you and HUWE1.ORG shall be governed by the laws of Scotland, England and Wales without regard to choice of law provisions. You and HUWE1.ORG agree to submit to the personal and exclusive jurisdiction of the pertinent local or courts located within or with Scotland. England and Wales regardless of the fact that the Site is accessible outside the UK. If you do access the Site outside the UK, your connection is through and to servers located in the UK. Any personal information you provide will be processed and maintained on HUWE1.ORG Site servers and/or has other network systems operated by or for HUWE1.ORG's benefit located within the UK. Notwithstanding the foregoing, HUWE1.ORG may seek equitable relief, including preliminary and permanent injunction, in any court of competent jurisdiction to prevent or enjoin misappropriation, misuse, unauthorised disclosure or infringement of any intellectual property rights. The failure of HUWE1.ORG to exercise or enforce any right or provision of the Terms of Use shall not constitute a waiver of such right or provision. If any provision of the Terms of Use is found by a court to be invalid, the parties nevertheless agree that the court should endeavour to give effect to the parties' intentions as reflected in the provision, and the other provisions of the Terms of Use remain in full force and effect. You agree that regardless of any statute or law to the contrary, you must file any claim or cause of action arising out of or related to your use of the Site or the Terms of Use within six (6) months after such claim or cause of action arose or be forever barred. The section titles in the Terms of Use are for convenience only and have no legal or contractual effect.

12. Violations

Please report any violations of the Terms of Use to .

huwe1gene@gmail.com