Effective Date: May 2010
EveryLife Foundation for Rare Diseases (“EveryLife”) respects the privacy of visitors to its Websites and values the confidence of its partners, supporters, and employees.
Visitors to EveryLife’s websites can generally visit without revealing any personally identifiable information. EveryLife only collects personally identifiable data (including, but not necessarily limited to, your name, address, telephone number, and email address) when you voluntarily submit such information to EveryLife through one of our websites.
Any personally identifiable data collected on this Website may be used and communicated by EveryLife, or by a third party individual or company acting on behalf of EveryLife, for processing, communications (such as e-mailing and other mailings) and other purposes consistent with this Privacy Notice. For example, EveryLife and its agents and contractors may exchange information described in this Privacy Notice with each other or with you over the Internet or intranet systems for the purposes of carrying out the activities and services described above. Agents and contractors of EveryLife who have access to personally identifiable information are required to protect this information in a manner that is consistent with this Privacy Notice by, for example, not using the information for any purpose other than to carry out the services they are performing for EveryLife.
While EveryLife makes every reasonable effort to protect the information collected through its websites, please be aware that there is always some risk involved when submitting data over the Internet. We cannot guarantee that our Website is 100% safe from illegal tampering or “hacking.” Any data transmitted over the Internet may be at risk; however, once it is received at EveryLife and entered into the EveryLife database, any data you have submitted has the same protection that EveryLife extends to its own confidential information.
We may track the total number of visitors to our Website, the number of visitors to each page of our Website, the sequence or duration of visitors to each page, IP addresses, and the domain names of our users’ Internet Services Providers, and we may analyze these data for trends and statistics in the aggregate, but such information will be in aggregate form only and it will not contain personally identifiable data. Such aggregate information is not linked to any personally identifiable information that can identify any individual.
Our Minors Policy is based on the Children’s Online Privacy Protection Act, which defines the term “child” to mean an individual under the age of 13. If you are under 13 years of age, you may not use this site or submit to EveryLife information about yourself, including, but not necessarily limited to, your name, address, telephone number or e-mail address without the written permission of your parent or guardian. We suggest that you have your parent register if you are interested in viewing this Website. Only the parent/guardian of a child may submit content and/or photos related to their child. If we discover that any personally identifiable information from a child under the age of 13 has been submitted by someone other than a parent or guardian, we will remove that information from our database as soon as possible.
Visitors between the ages of 13 and 18 must obtain permission from their parent or guardian before registering on this Website, sending any personally identifiable information, participating in online discussions, or submitting content to this Website.
Unless otherwise specified, you must be at least 18 years of age to participate in any online promotion or contest.
EveryLife may restrict the ability of any visitor to submit content or to access any part of the Website at EveryLife’s sole discretion.
For your reference, the Children’s Online Privacy Protection Act can be found at: http://www.ftc.gov/ogc/coppa1.htm.
If at any time you wish to stop receiving emails or other communications from us, or if you have submitted personally identifiable information through this Website and would like to have that information deleted from our records, please notify us at email@example.com.
You may also request access to your personal information held by EveryLife and you may request that we correct or amend your personal data by contacting us by email at firstname.lastname@example.org. As a reminder to you, when exchanging emails, any email that you send or receive on your employer’s email system may be the property of your employer. Consequently, your employer may have the ability to review your personal information sent via email.
As a convenience to our visitors, our sites may contain links to other (non-EveryLife) sites that we believe may offer useful information. Such links do not constitute an endorsement by EveryLife of those other websites, the content displayed therein, or the persons or entities associated therewith. The Privacy Notice presented here does not apply to those sites. You should contact those sites directly for information on their privacy policies, confidentiality agreements, and data collection/distribution procedures.
Our website uses a technology called “non-persistent cookies,” which is a small data file that a server gives to your browser when you access a website in order to let you access the pages you request and to track the pages visited. Using non-persistent cookies to track page visits helps us analyze our site usage more accurately. In cases in which non-persistent cookies are used, we will not collect your personally identifiable information except with your explicit permission.
If a portion of this Website requires a password, you are giving us explicit permission to use a “persistent cookie,” which is a small data file that is generated when, as a registered user of this Website, you enter your assigned user ID and password and access the site. This file is stored on your computer, and enables your browser to access each page that is in the password-protected area.
If you have any questions, comments or concerns about how your personal information is handled on this Website, you may contact the operator of this Website at:
EveryLife Foundation for Rare Diseases
1012 14th NW, Suite 500
Washington, DC 20005
Phone 202-697-RARE (7273)