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This document sets forth the policy of dravet.org, with respect to computer equipment, forum, website, and e-mail system usage. All personnel (including but not limited to employees, consultants, visitors to our website and others working with dravet.org) who use these systems are required to comply with this policy statement. Dravet.org grants the Webmaster the authority to enforce this policy, with oversight from the Board of Directors.
Dravet.org's website, located at www.dravet.org (this "Website"), is owned by dravet.org.
Your privacy is very important to us. Please be sure to read this entire Website Use and Privacy Policy before using or submitting information to this Website
By using this Website, You agree with the terms of this Website Use and Privacy Policy. Whenever You submit information via this Website, You consent to the use, collection and potential disclosure of that information in accordance with the terms and conditions set forth herein.
The Website you are currently visiting is the exclusive property of dravet.org. Access to this site bestows the right to private and non-exclusive use of the site, subject to standards of appropriate and responsible conduct and site usage and the policies set forth in this document. The whole of the elements on this site, including text, pictures, computer graphics, logos, brands, and other materials ("Content") form a work in the sense of the term used by the Intellectual Property code. Consequently, any reproduction of materials on this site, whether complete or partial, that occurs without the express written consent of the authors or assignees, is unlawful.
The information contained on this Website is for informational purposes only and is not intended to provide or replace medical advice. Dravet.org cannot and will not recommend treatment or offer medical advice with regard to treatment of Dravet syndrome, related forms of epilepsy, or any medical condition. If You have a question that relates to treatment, please contact a physician or healthcare professional, as this individual is most familiar with the specific medical condition and complete medical history. Never disregard professional medical advice or delay in seeking it because of something you have read on this or any other website.
If you think you may have a medical emergency, call your doctor or emergency dispatch immediately.
Although dravet.org will make reasonable efforts to include accurate and up-to-date information on this site, in no event shall dravet.org or its affiliated companies be liable in any way for errors or omissions in the contents of this Website or for any direct, indirect, incidental, consequential, punitive or other damages resulting from the use of, reliance on, access to, or inability to use this information, or from any alteration to the content of this site that dravet.org may make at any time.
Dravet.org does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the site. Reliance on any information provided by the dravet.org, dravet.org members or others appearing on the site is solely at your own risk.
Provided below is a non-exclusive list of prohibited acts associated with your use of dravet.org's e-mail, website, and forums. When considering the appropriateness of engaging in a particular act, members of dravet.org and visitors to this site should be guided by both the specific prohibitions and the other mandates set forth in this policy.
Prohibited activities include:
In addition, dravet.org sets forth the following policies and procedures regarding use of e-mail, website, and forum.
1. E-mail Content. E-mails sent on behalf of dravet.org should be professional, courteous and in compliance with all applicable laws. Unprofessional or disparaging communications should be reported to the site administrator. All e-mails sent on behalf of dravet.org should contain dravet.org's standard disclaimer statement, as set forth below:
CONFIDENTIALITY NOTICE: This message (including any attachments) may contain confidential information, protected by law. If this message is confidential, forwarding it to individuals, other than those with a need to know, without the permission of the sender, is prohibited.
This message is also intended for a specific individual. If you are not the intended recipient, you should delete this message and are hereby notified that any disclosure, copying, or distribution of this message or taking of any action based upon it, is strictly prohibited. If you have received this communication in error, please notify the sender immediately by replying to the message and deleting it from your computer
2. Reporting. Members who are aware of the violation of this policy by another person should report the violation to the site administrator immediately.
3. Viruses. Any viruses, tampering or system problems should be immediately reported to the webmaster.
4. Retention in the Event of Litigation, Subpoena, or Regulatory Inquiry. It is the policy of dravet.org to comply with all legal proceedings. In the event of any litigation, subpoena, regulatory inquiry, criminal proceeding, or the like, members of dravet.org are absolutely and unequivocally prohibited from deleting, discarding, or destroying any emails or any other documents relating in any way to the litigation, subpoena, regulatory inquiry, criminal proceeding, or the like.
5. No Waiver. Any delay or failure to act upon violations of this policy will not constitute a waiver of rights inuring to the benefit of The League.
We take reasonable and appropriate steps to protect Your personally identifiable information as You transmit Your information from Your computer to our site and to protect such information from loss, misuse, and unauthorized access, disclosure, alteration, or destruction. You should keep in mind that no Internet transmission is ever 100% secure or error-free. In particular, e-mail sent to or from this Website may not be secure, and You should therefore take special care in deciding what information You send to Us via e-mail.
E-mail communications and forum contents should not be assumed to be private and security cannot be 100% guaranteed. From a standpoint of personal privacy, this is particularly important as regards confidential medical information. Highly confidential or sensitive information should not be sent through e-mail or posted on this or any website. Personnel are required to use e-mail in a manner that will not risk the disclosure of The League’s proprietary and other information to persons outside of dravet.org.
Members should be careful in creating e-mail. Even when a message has been deleted, it may still exist in printed version, be recreated from a back-up system, or may have been forwarded to someone else. Users of these systems are asked not to create e-mails or post matters on the dravet.org forum which may bring specific individuals, other legal entities or dravet.org into disrepute.
Use of the forum or e-mail to disclose confidential information, which may be protected by copyright or trademark protections is strictly prohibited. Members who choose to disseminate confidential medical information via forums sponsored by dravet.org, or via e-mail to dravet.org members do so at their own risk. Dravet.org, individually and collectively, assumes no liability or responsibility for damage caused by the dissemination of confidential information, including but not limited to, medical information.
This site points towards third party sites. Links to the sites of medical facilities are established in cooperation with the concerned sites as appropriate to the context, and in consideration of the content and services they provide. Links to other resources are provided as a courtesy only. Dravet.org does not endorse these third party sites or the products or services they provide. Dravet.org bears no responsible for the content of these sites or of the use other users may make of them, nor does our Privacy Policy extend to these sites. We encourage You to read the Privacy Policy of every Website You visit.
This is a forum of ideas, so advertisements are not allowed in this venue. Blatant advertising or solicitations of or for other businesses (either for profit or non-profit), is prohibited without the express written consent of the Board of Directors. Dravet.org understands that from time to time, individuals may post a suggestion for equipment that was requested by another member. Such a request would not serve to violate this advertising ban (which is designed to prevent the thedravet.org Forum being used as a means for gaining a free commercial and/or advertising advantage).
Statements posted on the forum are subject to review at any time for compliance with dravet.org policies and procedures. Violations of this policy may result in suspension of privileges, warnings, and/or removal of inappropriate content from League-sponsored forums or communication mechanisms.
This Website is not intended for persons under the age of 18. You have indicated that You are at least 18 years of age by submitting information to the dravet.org Website.
Please be aware that certain information that You submit may be personally identifiable information (that is, information that can be uniquely identified with You, such as Your full name, address, e-mail address, phone number, and so on).
Yes. Cookies are small files that a site or its service provider transfers to your computers hard drive through your Web browser (if you allow) that enables the sites or the service providers systems to recognize your browser and capture and remember certain information. We use cookies to understand and save your preferences for future visits.
We do not sell, trade, or otherwise transfer to outside parties your personally identifiable information. This does not include trusted third parties who assist us in operating our Website, as long as those parties agree to keep this information confidential. We may also release your information when we believe release is appropriate to comply with the law, enforce our site policies, or protect ours or others rights, property, or safety.
Personal data that you have voluntarily entered electronically is delivered to servers located in the United States. By using the Website, You consent to the transfer of any and all personal data that You provide to Us, and to our use of such personal data as outlined in this Policy.
Your use of this Website is subject to Our Legal Notice.
If You have any questions, comments, or concerns about this Policy or the information practices of this Website, please contact us via:
dravet.org
P.O. Box 66599
Baltimore, MD 21239-6599
866-828-1843
info@dravet.org
Comments, suggestions, or other communications sent by You to Us are deemed to be non-confidential. We have no obligations of any kind in relation to such comments, suggestions, or communications and are free to use or distribute them in any way, including in relation to the administration, update, or improvement of this Website, without compensation to the author, sender, or any other party.
Dravet.org may, from time to time, and in its sole discretion, change or modify this Website Use and Privacy Policy. Any changes or modification will be effective upon posting of the revisions on this Website. At any given time, Your access and use of this Website and provision of information is governed by the Website Use and Privacy Policy then in effect. Dravet.org may post changes or modifications to referenced policies and guidelines without Your approval, and may determine whether and when any such changes apply to You. Your continued use of the Website following dravet.org's posting of any changes or modifications will constitute Your acceptance of such changes or modifications. Should You not wish to be bound by the modified Privacy Policy; You may not use or access the Website.
This Policy was last updated on June 21,2011.
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