Users agree to comply with the Terms and Conditions as stated herein and on this website.
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.
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.
8. HUWE1.org's Proprietary Rights
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.
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