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.
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.
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.
8. The Aarskog Foundation's Proprietary Rights
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.
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
11. General Information