Privacy Policy

Effective Date: May 30, 2018

The National Gaucher Foundation, Inc. and National Gaucher CARE Foundation, Inc. (collectively, “National Gaucher Foundation,” “we,” “our,” or “us”), offers this privacy policy to inform you how we may collect, use, and share information that you or others provide to us when you visit (the “Site”), donate to us, or contact us offline.


Our Site and the servers that store information obtained from visitors to our Site are located within the United States of America and we cannot guaranty that our data collection practices fully comply with the requirements of Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 (the “General Data Protection Regulation” or “GDPR”) pertaining to the treatment of your user information in accordance with the GDPR. As such, we do not target this Site to individuals residing within the EU and you are advised to not provide any personal data to us, although you are free to browse this Site for general information regarding Gaucher disease and our work. If you elect to continue browsing the Site, please see our Cookie policy below. If you have any questions that cannot be answered through browsing the Site, we recommend that you contact the European Gaucher Alliance organization operating in Europe,

Information Collection

When you visit our Site, you may voluntarily enter personal information, which includes your name, e-mail address, mailing address (or ZIP code), payment card information, and other information that we may request from time to time.  You may provide this information to us, for example, when you sign up for our newsletter, donate to us, search for a physician or treatment location, fill out surveys, or otherwise provide personal information to us.

We may also automatically collect information about your visit to the Site, such as pages most frequently accessed, your IP address, or the type of web browser you are using.

Information Use

We may use personal information for, among other things:

  • Operating our organization and providing our services, including responding to your requests;
  • Internal record keeping;
  • Providing tax receipts to donors;
  • Communicating with you and offering content of interest to you;
  • Customizing the Site; and
  • For the purposes disclosed at the time of collection.

Information Sharing

We will not sell, rent, or disclose your personal information to an unaffiliated third party, except with your permission or for circumstances described in this policy or at time of collection.  We may share personal and aggregate information in certain circumstances, including sharing with:

  • Third party service providers that assist us with various activities, such as payment processors;
  • Entities as required by a court order, subpoena, warrant, or when otherwise required by law;
  • Entities as part of a sale or merger of all or part of our organization, including at bankruptcy;
  • Entities to protect our rights and the rights of others; and
  • Other third parties with your permission.

We may share de-identified or aggregate information with other third parties in our discretion.  For example, we also partner with third parties who are conducting research into Gaucher disease.  We do not provide personal information to these third parties, but may provide them with de-identified or aggregate information. 

Cookies and Similar Technologies

We may use cookies to enhance your experience on the Site. A “cookie” is a small piece of data that is stored on your computer’s hard drive.  Cookies are used to collect non-identifying information to facilitate your use of the Site, including by saving passwords and your preferences.  If you would prefer not to receive cookies, you can change your browser settings to refuse cookies. If you choose to have your browser refuse cookies, it is possible that some areas of our Site will not function properly when you view them.

The Site also may use other technologies to track the specific pages viewed by visitors on the Sites or to target specific content that might be of interest to you. These technologies help us to understand how visitors use the Site.

Third-Party Links

The site may provide links to third-party websites or apps.  We do not control the privacy practices of those websites or apps, and they are not covered by this privacy policy.  You should review the privacy policy of other websites or apps to learn about their data practices.


We take reasonable measures to help protect the personal information we collect from unauthorized access and use.

Your Choices

You may opt out of our use of personal information for marketing purposes by emailing us at  To opt out of commercial emails from the National Gaucher Foundation, you can also use the link provided at the bottom of each such message.

Social Media

This Site may include social media features.  These features may collect information from you, such as which page you are visiting on our site, and may set a cookie to enable the feature to function properly. Social media features are either hosted by a third party or hosted directly on our Site. Your interactions with these features are governed by the privacy policy of the company providing it. Please see below for more information on advertising activities on our Site.

Digital Advertising

We may partner with ad networks and other ad serving providers (“Advertising Providers”) who serve ads on behalf of us and others on non-affiliated sites.  Some of those ads may be personalized, meaning that they are intended to be relevant to you based on information Advertising Providers collect about your visits to this Site and elsewhere on the Internet over time.

You may visit to learn more about this type of advertising and how to opt-out of this type of advertising by companies participating in the Digital Advertising Alliance self-regulatory program.  Note that electing to opt out will not stop advertising from appearing in your browser or applications.  It may make the ads you see less relevant to your interest.  In addition, note that if you use a different browser or erase cookies from your browser, you may need to renew your opt-out choice.

Google Analytics service is installed on the Site. Information about data that Google Analytics collects is available here.


This Site is not intended for use of children under the age of 13.  We do not knowingly collect personal information from children under the age of 13. 

California Privacy Rights

Pursuant to Section 1798.83 of the California Civil Code, residents of California have the right to request from a business, with whom the California resident has an established business relationship, certain information with respect to the types of personal information the business shares with third parties for direct marketing purposes by such third party and the identities of the third parties with whom the business has shared such information during the immediately preceding calendar year. As of the Effective Date of this Privacy Policy, National Gaucher Foundation does not share your information with third parties for marketing purposes.

To request a copy of the information disclosure provided by us pursuant to Section 1798.83 of the California Civil Code, please contact Amy Blum, Chief Operating Officer,

Updating Your Information

You may request to review, change or update your personal information by emailing us at

Changes to Our Privacy Policy

We may change this privacy policy from time to time.  We will post these changes in this policy, and suggest that you revisit this policy periodically to stay informed of any changes.

Contact Us

If you have questions, comments, or concerns about this Privacy Policy, please contact us at:

National Gaucher Foundation
5410 Edson Lane, Suite 220
Rockville, Maryland 20852



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