Privacy Policy

This Privacy Policy (hereinafter, “Privacy Policy” or “Policy”) describes how Genetic Alliance (“we,” “us,” or “our”) processes your ‘Personally Identifiable Information’ (PII) when you visit the website found at (hereinafter, “Website”). PII, as described in US privacy law and information security, is information that can be used on its own or with other information to identify, contact, or locate a single person, or to identify an individual in context. Please read this Privacy Policy carefully to understand what information is collected through this Website, and how such information is otherwise used, protected, and handled by us.

What PII do we collect from the people who visit the Website?
When you visit and interact with our Website, you may be asked to enter your name, email
address, phone number, PCORnet network affiliation, or other details to help improve your

When do we collect PII?
We collect your PII when you register or enter information on the Website using the contact
form; use the forum, docs, or activity functions of the Website; or provide feedback.

How do we use your information?
We may use the information we collect from you when you register, respond to a survey or
other communication, search the Website, or use certain other Website features in the
following ways:

  •  To improve your experience and allow us to deliver the type of content and resources in
    which you are most interested.
  • To improve our Website to better serve you.

We use PII for purposes of administering our PCORnet business activities and providing
customer service and technical assistance to users.

Occasionally, we may also use the information we collect to notify you about important new
Website features, functionality, or resources we think you will find valuable. You may notify us
at any time if you do not wish to receive these notifications by contacting us via email at

How do we protect your information?
We use administrative and technical measures to safeguard your information, including turning
off HTTP trace functionality, removing of WordPress installation header outputs, altering
default database prefix for WordPress, blocking query strings that are potentially dangerous,
and using Malware scanning. Additionally, SSL and Firewall protection are in place throughout
the entire Website. Since the Commons only provides resources, articles, and information, we will never ask for personal information such as social security numbers or credit card numbers.

Does the Commons use ‘cookies’?
No, we do not use first-party cookies for tracking purposes. You can choose to have your
computer warn you each time a cookie is being sent, or you can choose to turn off all cookies
through your browser settings. Since every browser is a little different, look at your browser’s
Help Menu to learn the correct way to modify your cookies.

If you turn cookies off, some features on this Website will be disabled. That may make your
Website experience less efficient and some areas may not function properly.

Your California and Other State Privacy Rights:
We do not currently recognize “do not track” signals that may be sent by certain browsers.
Other third parties may deliver cookies to your device in order to track your online behaviors
over time and across nonaffiliated websites or to deliver targeted advertisements either on this
Website or on other websites. You have choices about the information third parties may collect
about you through this Website. For example, if you do not want your information sent to a
third party, you may download an Opt-out Browser Add-on.

Google Analytics and Cookies
We use Google Analytics to compile data regarding user interactions on our Site. Google
Analytics uses third-party cookies. You may opt out of Google Analytics at any time by clicking

Third-party disclosure
We do not sell, trade, or otherwise transfer to outside parties a user’s PII unless we provide the
user with advance notice. We do, however, share information with Website hosting partners
and other parties who assist us in operating or funding our Website, conducting our business,
or serving our users, so long as those parties agree to keep this information confidential. We
may also release information when its release is appropriate to comply with the law, enforce
our Website policies, or protect ours or others’ rights, property or safety.

In relation to an ongoing or proposed business transaction (such as transferring the ownership
and operation of Genetic Alliance or this Website), we may transfer your PII to a successor or
potential successor organization. If such a transfer occurs, the successor organization’s use of
PII that was collected through this Website will remain subject to this Policy and the privacy
preferences expressed to us.

Non-personally identifiable visitor information, such as your web browser, operating system,
and pages visited, may be provided to other parties for marketing, advertising, or other uses.

This Website is funded by the Patient-Centered Outcomes Research Institute (“PCORI”), and information obtained from this Website may be shared with them, in accordance with this Privacy Policy. Any questions about PCORI’s activities, including in relation to this Website, should be directed to PCORI at 1828 L Street, NW, Suite 900, Washington, DC 20036.

Third-party links
Occasionally, at our discretion, we may include third-party links on the Website. These third-party sites have separate and independent privacy policies, and we encourage you to review
those policies. We therefore have no responsibility or liability for the content and activities of
these linked sites, or for their privacy policies. Nonetheless, we seek to protect the integrity of
our Website and welcome any feedback about these third-party sites.

Opting out
You may opt out of any future contact from us at any time and unsubscribe from receiving
future emails by emailing us at and we will remove you
from all correspondence. You can also contact us anytime to:
• See what data we have about you, if any.
• Change/correct any data we have about you.
• Have us delete any data we have about you.
• Express any concern you have about our use of your data.

User privileges:
• Users can visit the Website anonymously, unless you choose to share your PII with us.
• A link to this privacy policy is located on the Commons homepage.
• You will be notified of any Privacy Policy changes through a notice on our Privacy Policy
Page and by reviewing the date this policy was last updated.
• Users can review, change or delete their personal account information at any time by
logging in to their account.

COPPA (Children Online Privacy Protection Act)
When it comes to the collection of personal information from children under the age of 13
years old, the Children’s Online Privacy Protection Act (COPPA) puts parents in control. The
Federal Trade Commission, United States’ consumer protection agency, enforces the COPPA
Rule, which spells out what operators of websites and online services must do to protect
children’s privacy and safety online.

We do not specifically market to children under the age of 13 years old. If you are a parent or guardian of a child under the age of 13 and become aware that we have collected PII from your child, you may contact us as provided below to have your child’s information deleted.

Contacting Us
If you have any questions regarding this Privacy Policy or would like to exercise any of your
rights described in this Policy, contact us using the information below:
4301 Connecticut Ave NW, Suite 404
Washington, DC 20008
United States of America