Terms of Use

The Aarskog Syndrome Foundation (" The Foundation or "The Aarskog Foundation") maintains its websites located at www.aarskogsyndromefoundation.co.uk 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 members and visitors ("you" or "your") information about its mission and to give you access to disease-specific information and advocacy resources. These Terms of Use are a binding contract and we encourage you to read them. By accessing, registering on 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.

Registration through The Aarskog Syndrome Foundation grants you access to multiple services. 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 The Aarskog Foundation, information it provides, membership, advocacy and programs, publications, news and events. The Foundation permits 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 and print portions of 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 The Aarskog Foundation's prior written approval is strictly prohibited.

2. The Aarskog Foundation Information

The Aarskog Foundation is a collaborative effort that marshals the assets and information collected by a variety of other not-for-profit organisations whose focus is educating with respect to specific Aarskog Syndrome. We leverage the expertise of the The Aarskog s community through collaborative engagement. This means that Licensed Content is not only provided by the Foundation but also gathered through its members, visitors, and others who upload material to the Site as well as pursuant to links to community organisations, the research and medical community, public policy and advocacy groups industry and the government. The Aarskog Foundation uses commercially reasonable efforts to provide accurate information. However, some information may be cutting edge, up-to-the-minute research data that has not yet been corroborated and The Aarskog Foundation does not review the content of all material posted to or accessible through links from the Site. Therefore, The Aarskog Foundation cannot ensure or guarantee and does not warrant that its Licensed Content or that the recommendations, User Submissions (as hereinafter defined) regulations or other information provided by Aarskog experts or other Site users is useful, safe, unobjectionable, decent, inoffensive, thorough, complete, accurate, up-to-date, or will meet your particular needs or requirements. The Aarskog Foundation does not endorse any User Submission or any opinion, recommendation or advice expressed therein and expressly disclaims any and all liability in connection with User Submissions. You waive any legal or equitable rights or remedies you have or may have against The Aarskog Foundation with respect thereto and agree to indemnify and hold the Foundation harmless to the fullest extent allowed by law regarding all matters in connection with your use of the Site.

3. Privacy and Data Security

The Aarskog Foundation 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. The Aarskog Foundation does not guaranty 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 The Aarskog Foundation who you are or revealing personal information about yourself. However, The Aarskog Foundation, its members and collaborative organisations as well as companies providing services to or on behalf of the Foundation (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. However, if you do so you may not be able to participate in those features of the Site that require registration. The Aarskog Foundation and/or its service providers may use this information to communicate with you via email or other means and/or for advocacy, to analyse statistics and trends, for reporting, research, and educational purposes whether commercial or non-commercial. 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 collected and stored.

The Aarskog Foundation may use any information gained through the Site for any legal purpose.

Except for any personally identifiable information the Foundation 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, including on the Resource Repository, or via email to The Aarskog Foundation (collectively, "User Submissions") are non-confidential and non proprietary. The The Aarskog Foundation 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. Please exercise caution and discretion in disclosing personal information through, including uploading photos to, the Resource Repository or any public forums.

If The Aarskog Foundation 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 The Aarskog Foundation's rights or property, the rights or property of other Site users or anyone else that could be harmed by such activities. The Aarskog Foundation may disclose or access account information when The Aarskog Foundation believes, in good faith, that the law requires it, for administrative and other purposes deemed necessary to maintain, service and improve the Site and The Aarskog Foundation'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/Community Guidelines

In general, The Aarskog Foundation expects visitors to interact with the Foundation and other users of the Site in a truthful, courteous manner and in compliance with all laws. You agree to provide accurate and complete information when registering and never use another's account or registration. You are responsible for the activity that occurs through your password or user id and must keep them secure. While The Aarskog Foundation will not be responsible for any losses you may incur by any unauthorized use of your account, you may be liable for the losses of the Foundation or others due to such unauthorised use.
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 the Foundation 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 the Foundation 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 the Foundation 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, the Foundation 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. The Foundation 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 the Foundation 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 The Aarskog Foundation 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 The Aarskog Foundation, its 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 The Aarskog Foundation 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 The Aarskog Foundation 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 the Foundation 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. The Aarskog Foundation 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. The Aarskog Foundation, 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. The Aarskog Foundation 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. The Aarskog Foundation 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 the Foundation endorses the linked site. Your use of any links is at your own risk. You further acknowledge and agree that The Aarskog Foundation 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. The Aarskog Foundation'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 The Aarskog Foundation. 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 The Aarskog Foundation. 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 The Aarskog Foundation 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. The Aarskog Foundation 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 The Aarskog Foundation agree otherwise in writing, The Aarskog Foundation is and shall be the sole and exclusive owner.

9. Disclaimers and Limitations of Liability

The Aarskog Foundation does not offer legal or medical advice or The Aarskog counselling and nothing contained in the Licensed Content or on the Site should be construed as offering such advice. The Aarskog Foundation 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. THE AARSKOG FOUNDATION 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) THE AARSKOG FOUNDATION 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 THE THE AARSKOG FOUNDATION, 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 THE AARSKOG FOUNDATION 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 THE AARSKOG FOUNDATION 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, THE AARSKOG FOUNDATION'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 THE AARSKOG FOUNDATION 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. Notice/Opt Out Options

Notices to you may be made via either email or regular mail. The Aarskog Foundation may also provide notices of changes to these Terms of Use or other matters by displaying notices or links to notices to you generally on the Site.

11. General Information

These Terms of Use and any other agreements, whether or not referenced herein, constitute the entire agreement between you and The Aarskog Foundation with regard to and shall govern all purchases. Your activities and use of the Site supersede any prior agreements between you and The Aarskog Foundation. These Terms of Use, your use of the Site and any other agreement with and the relationship between you and The Aarskog Foundation shall be governed by the laws of Scotland, England and Wales without regard to choice of law provisions. You and The Aarskog Foundation 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 The Aarskog Foundation's Site servers and/or has other network systems operated by or for The Aarskog Foundation's benefit located within the UK. Notwithstanding the foregoing, The Aarskog Foundation 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 The Aarskog Foundation 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 .
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