Privacy Policy
Last updated: April 21, 2022
Genetic Alliance , the 501(c)3 nonprofit that operates this site (also referred to as “we,” “us,” “our”), is committed to protecting your privacy. Below is a summary of our privacy procedures, including issues of confidentiality.
Your privacy is important to us. To better protect your privacy, we provide this Privacy Policy explaining our online information practices and your options for how your information is collected and used. To make this Privacy Policy easy to locate, we make it available as a link at the bottom of each page on this site.
Please review this Privacy Policy carefully to understand how we collect information, how we use it, with whom we share it, and the choices available regarding our use of it. If you disagree with our policies and practices, you may choose not to use this site or related services. By accessing and using this site and related services, you accept and agree to this Privacy Policy.
Information we collect and how we use it
When you contact us using embedded email links, your email address, name, and other information included in the email are forwarded through the site to the appropriate persons within Genetic Alliance to respond. Hard copies of these letters may be kept by Genetic Alliance.
When you contact us using embedded forms on this site, your email address, name, organization, and any other information provided in the form are forwarded through the site to the appropriate persons within Genetic Alliance to respond. We do not share this information outside of Genetic Alliance. We use this information to:
Offer and provide information and services to you;Communicate with you about and administer your participation in events and webinars offered by Genetic Alliance;Communicate with you about and administer your participation in events and webinars offered by Genetic Alliance;Operate, evaluate and improve our programs and services.We may also use the information you share to connect you with other users of the Genetic Alliance site and services. We will do this only with your explicit permission.
We also use Plausible Analytics to track overall trends in the usage of our website. Plausible Analytics collects only aggregated information, which does not allow us to identify our website visitors. This information is used for internal purposes by Genetic Alliance staff only to improve our understanding of site utilization and inform the services and events we offer to supplement the content provided on this site. For more information about the data collected by Plausible Analytics, please visit the Plausible Analytics Data Policy.
We do not collect cookies.
Other sites
Genetic Alliance links to other sites that may interest to those who use our site. Genetic Alliance is not responsible for the privacy practices or the content of such websites.
Confidentiality
Genetic Alliance is firmly committed to the principle of confidentiality of information for its activities and programs. Genetic Alliance staff members, its volunteers, and paid consultants have an ethical and legal obligation to respect the privacy of all agency and participant information. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, or organizational activities.
Procedures for maintaining confidentiality
All individuals involved with Genetic Alliance programs or data, whether in a staff, volunteer, or consultant capacity, shall sign an assurance of confidentiality, which will be kept on file at the Genetic Alliance office.
All individuals working with Genetic Alliance in any capacity shall keep completely confidential the names of individuals contained in any data files, including these individuals’ affiliation or genetic condition. All information or opinions, whether the information is learned directly or incidentally, shall also be kept confidential. Individuals shall exercise reasonable caution to prevent access by others to agency, member organizations, or individual consumer information in their possession.
Any data containing personal identifiers (names, etc.) shall be kept in a secure area when not being used. Reasonable caution shall be exercised in limiting access to information to only those working with Genetic Alliance on a project or as a part of other organizational activities and who have been instructed in the applicable confidentiality requirements.
If records or forms with identifiers are to be transmitted to another party, such as for data entry, any outside parties shall be informed of these procedures and shall sign an assurance of confidentiality form.
At the end of the period of performance, project, or organizational activity, Genetic Alliance CEO, as required, will determine how documents and information will be disposed of. Genetic Alliance has review rights for any publication that may result from surveys, data analysis, or other activities performed using Genetic Alliance information. "Publication" means a written article or paper that will be presented at a meeting, published in a journal, newsletter, or other widely circulated periodical.
We do our best to ensure that all information posted on this website is accurate, respects copyright and is non-defamatory. If you wish to bring our attention to content that you believe does not meet these standards, please contact us . Please include a link to the webpage in question along with your specific concerns. We will respond promptly.
Changes to our privacy policy
At our sole discretion, we may make changes to this Privacy Policy at any time. We will post an updated Privacy Policy on this site when changes are made. The changes will apply to all information we have about you. All changes are effective immediately upon posting; the date the Privacy Policy was last revised is identified at the top of the page. If you access and use our Site or Services after the date on which the Privacy Policy has changes, Genetic Alliance will treat your use as acceptance of the updated Privacy Policy.
Contact information
Genetic Alliance, Inc. 26400 Woodfield Road #189, Damascus MD 20872 202-966-5557 Contact Us