- Alliance Information
- Privacy and Data Security
- User Conduct/Community Guidelines
- User Submissions
- Genetic Alliance’s Proprietary Rights
- Notices and Procedures for Making Claims of Copyright Infringement
- Disclaimers and Limitations of Liability
- Notice/Opt Out Options
- General Information
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2. Alliance Information
The Genetic Alliance is a collaborative effort that marshals the assets and information collected by a variety of other not-for-profit organizations whose focus is educating with respect to specific genetic diseases. Some of the information might not otherwise be available through the Internet if it were not for our Resource Repository. We leverage the expertise of the genetics community through collaborative engagement. This means that Licensed Content is not only provided by the Alliance but also gathered through its members, visitors, and others who upload material to our Resource Repository as well as pursuant to links to community organizations, the research and medical community, public policy and advocacy groups industry and the government. The Alliance 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 Alliance does not review the content of all material posted to or accessible through links from the Site. Therefore, the Genetic Alliance 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 Genetic Alliance 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 Genetic Alliance 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 Genetic Alliance with respect thereto and agree to indemnify and hold the Alliance 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 Genetic Alliance 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 Genetic Alliance 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 Genetic Alliance who you are or revealing personal information about yourself. However, the Genetic Alliance, its members and collaborative organizations as well as companies providing services to or on behalf of the Alliance (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 discernable 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 Genetic Alliance and/or its service providers may use this information to communicate with you via email or other means and/or for advocacy, to analyze 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 optimization 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 Genetic Alliance may use any information gained through the Site for any legal purpose.
Notice to California residents about your California privacy rights: In addition to the other rights described in this policy, if you reside in California, you have the right to request information regarding the third parties with whom the Genetic Alliance has shared your personal information for direct marketing purposes during the past year. You have the right to submit a request to the Genetic Alliance at its designated address and receive the following information within 30 days of its receipt of that request: (1) the types of personal information disclosed to third parties during the immediately preceding calendar year, (2) the names and addresses of third parties that received the personal information, and (3) if the nature of a third party’s business cannot be reasonably determined from the third party’s name, examples of its products or services. You are entitled to receive a copy of this information in a standardized format. Information provided will not be specific to you individually. All such requests must be in writing and sent to the Genetic Alliance’s designated address set forth in Section 10.
Except for any personally identifiable information the Alliance 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 Genetic Alliance (collectively, “User Submissions”) are non-confidential and nonproprietary. The Genetic Alliance 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 noncommercial purposes. Please exercise caution and discretion in disclosing personal information through, including uploading photos to, the Resource Repository or any public forums.
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4. User Conduct/Community Guidelines
In general, the Genetic Alliance expects visitors to interact with the Alliance 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 Alliance 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 Alliance or others due to such unauthorized 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 Alliance 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, libelous, 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 Alliance 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 Alliance 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 Alliance 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 Alliance 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 Alliance 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 Genetic Alliance 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. Any claims made through the Resource Repository provided on the Site have not undergone review, testing, or research by Genetic Alliance to substantiate such claims.
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5. User Submissions
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9. Genetic Alliance’s Proprietary Rights
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10. Notices and Procedures for Making Claims of Copyright Infringement
Pursuant to Title 17, United States Code, Section 512(c)(2), notifications of claimed copyright infringement should be sent to the Genetic Alliance.
The Genetic Alliance respects the intellectual property of others, and asks its users and visitors to do the same. The Genetic Alliance will process and investigate notices of alleged infringement and will take appropriate actions under the Digital Millennium Copyright Act (“DMCA”) and other applicable intellectual property laws. Upon receipt of notices complying with the DMCA, the Genetic Alliance will act to remove or disable access to any material found to be infringing or found to be the subject of infringing activity and will act to remove or disable access to any reference or link to material or activity that is found to be infringing.
If you believe that your work has been copied in any way that constitutes copyright infringement, please provide all of the following information:
a. a physical or electronic signature of the person authorized to act on behalf of the owner of an exclusive copyright that is allegedly infringed;
b. a description of the copyrighted work that you claim has been infringed;
c. a description of where the material that you claim is infringing is located on the Site;
d. your address, telephone number, and email address and all other information reasonably sufficient to permit the Genetic Alliance to contact you;
e. a statement by you that you have a good faith belief that the disputed use is not authorized by the copyright owner, its agent, or the law;
f. a statement by you, made under penalty of perjury, that the above information in your Notice is accurate and that you are the copyright owner or authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.
Notices of claimed copyright infringement should be directed to:
By mail: The Genetic Alliance
4301 Connecticut Avenue NW – Suite 404
Washington, D.C. 20008-2369
Attn: Resource Repository
By fax: 202.966.8553
By Email: firstname.lastname@example.org
(Please include “Notice of Infringement” in the subject line.)
IMPORTANT NOTE: THE PRECEDING INFORMATION IS PROVIDED EXCLUSIVELY FOR NOTIFYING THE GENETIC ALLIANCE THAT YOUR COPYRIGHTED MATERIAL MAY HAVE BEEN INFRINGED. ALL OTHER INQUIRIES, SUCH AS PRODUCT-RELATED QUESTIONS AND REQUESTS, OR QUESTIONS ON PRIVACY, WILL NOT RECEIVE A RESPONSE THROUGH THIS PROCESS.
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11. Disclaimers and Limitations of Liability
The Genetic Alliance does not offer legal or medical advice or genetic counseling and nothing contained in the Licensed Content or on the Site should be construed as offering such advice. The Genetic Alliance 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. GENETIC ALLIANCE 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) GENETIC ALLIANCE 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 GENETIC ALLIANCE 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 GENETIC ALLIANCE 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 GENETIC ALLIANCE’S SOLE LIABILITY, AND THAT OF ITS LICENSORS, SUPPLIERS AND PARTNERS, IS LIMITED TO FIVE DOLLARS ($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 GENETIC ALLIANCE 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.
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12. Notice/Opt Out Options
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13. General Information
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