Privacy Policy

Terms and Conditions of Use


Gaucher Community Alliance respects your privacy and is committed to protecting it through compliance with this Privacy Policy. This Policy describes the types of information we may collect from you or that you may provide when you visit our Site or use our Services, and our practices for collecting, using, maintaining, protecting and disclosing that information. We also describe the measures we take to protect the security of the information and how to contact us about our privacy practices.

Please review this Privacy Policy carefully to understand how we collect information, how we use the information, with whom we share it, and the choices available regarding our use of the information. If you do not agree with our policies and practices, you may choose not to use our Site or our Services. By accessing and using the Site or our Services, you accept and agree to this Privacy Policy.

Information We Collect

We collect information when you register on our Site, use our Services, and when you choose to provide information through our Site. The types of information we may collect include:

  • Contact information (name, postal address, email address, and phone number);
  • Username and password;
  • Your role in rare disease;
  • Content you may provide through our message boards and forums (such as event details and photos).

In addition, when you visit our Site, we may collect certain information by automated means, such as cookies and web beacons. The information we obtain in this manner includes: IP address, browser characteristics, device characteristics, operating system, referring URLs, geographic location, information on actions taken on our Site, and dates and times of website visits. A “cookie” is a text file that websites send to a visitor’s computer or other Internet-connected device to uniquely identify the visitor’s browser or to store information or settings in the browser. A “web beacon,” also known as an Internet tag, pixel tag or clear GIF, links web pages to web servers and their cookies and may be used to transmit information collected through cookies back to a web server. Through these automated collection methods, we obtain “clickstream data,” which is a log of content on which a visitor clicks while browsing a website. As the visitor clicks through the website, a record of the action may be collected and stored. Your browser may tell you how to be notified when you receive certain types of cookies or how to restrict or disable certain types of cookies. Please note, however, that without cookies you may not be able to use all of the features of our website.

How We Use the Information We Collect

Gaucher Community Alliance may use the information we collect to:

  • create and manage your account;
  • offer and provide information and services to you;
  • display content on our Site;
  • personalize your Site experience and deliver the type of content in which you are most interested;
  • communicate with you about, and administer your participation in, surveys, events, programs, webinars, newsletters, promotions and other Site features;
  • respond to and communicate with you about your inquiries and requests and provide information you request;
  • send periodic emails regarding your account or other Services;
  • operate, evaluate and improve our business (including developing new products and services; enhancing and improving our services; managing our communications; analyzing our products; performing data analytics; and performing accounting, auditing, billing reconciliation and collection activities and other internal functions);
  • perform data analyses and processing (including market and consumer research, trend analysis, financial analysis, anonymization, encryption and tokenization of personal information);
  • protect against, identify and prevent fraud and other criminal activity, claims and other liabilities; and
  • comply with and enforce applicable legal requirements, relevant industry standards and our policies.

In addition, we use may information collected online through cookies, web beacons and other automated means for purposes such as (i) customizing our users’ visits to our Site, (ii) delivering content tailored to our users’ interests and the manner in which our users browse our Site, and (iii) managing our business. We may also use this information to help diagnose technical and service problems, administer our Site, identify users of our Site, and gather demographic information about our users. We may use clickstream data to determine how much time users spend on web pages of our Site, how users navigate through our Site, and how we may tailor our Site to better meet the needs of our users.

We may use third-party service providers to assist us in better understanding our Site visitors. These service providers use technologies such as cookies, web server logs and web beacons to help us analyze how visitors use the Site. The information collected through these means (including IP address) is disclosed to these service providers, who use the information to evaluate use of the website.

Information We Share

We do not sell, trade or otherwise share information about you, except as described in this Privacy Policy. We may share information with third parties who perform services on our behalf. These third parties are not authorized by us to use or disclose the information except as necessary to perform services on our behalf or comply with legal requirements. We also may share the information we obtain with our affiliates, subsidiaries and partners.

We may disclose information about you (i) if we are required to do so by law or legal process, (ii) to law enforcement authorities or other government officials based on a lawful disclosure request, (iii) when we believe disclosure is necessary or appropriate to prevent physical harm or financial loss, or in connection with an investigation of suspected or actual fraudulent or illegal activity, or (iv) when you authorize us to. We reserve the right to transfer any information we have about you in the event we merge or transfer all or a portion of our business or assets (including in the event of a reorganization or dissolution).

Your Choices

Your use of our Site and Services is voluntary. We offer you certain choices about how your information is collected, used, and shared, from deleting or correcting information you include in your profile and controlling the visibility of your posts to advertising opt-outs and communication controls. You can control the visibility of your account profile. You can review and change your preferences by logging into your account. You may also update your preferences, remove your information, or delete your account in the Settings area of your profile.

You may choose to close your account at any time. If you choose to close your account, your personal information will stop being visible to others on our Site immediately. We generally delete closed account information within 30 days of account closure, except as noted below. If you chose to close your account, you may continue to receive emails from us. You can unsubscribe from our emails at any time by following the instructions contained within the email.

We retain your personal information even after you have closed your account if reasonably necessary to comply with our legal obligations (including law enforcement requests), meet regulatory requirements, resolve disputes, maintain security, prevent fraud and abuse, or fulfill your request to “unsubscribe” from further messages from us. We will retain de-personalized information after your account has been closed. In addition, information that has already been de-identified, anonymized, and/or aggregated prior to the closing of your account may not be retrievable or traced back for destruction, deletion, or amendment. Information you have shared with others (e.g., through group posts) will remain visible after you have closed your account or deleted the information from your own profile, and we do not control information that other users copied out of our Site.

Links to Other Websites

Our Site may provide links to other websites for your convenience and information. These websites may operate independently from us. Linked websites may have their own privacy policies, which we strongly suggest you review if you visit any linked websites. To the extent any linked websites you visit are not owned or controlled by us, we are not responsible for those websites’ content, any use of those websites, or the privacy practices of those websites.

How We Protect Your Information

Gaucher Community Alliance takes reasonable and appropriate measures to protect your information from accidental, unlawful or unauthorized destruction, loss, alteration, access, disclosure or use. Gaucher Community Alliance implements certain physical, administrative, and technical safeguards that are designed to protect the integrity and security of your information. Gaucher Community Alliance personnel may access and use information only if they are authorized to do so and only for the purpose for which they are authorized.

The safety and security of your information also depends on you. You are responsible for maintaining the confidentiality of your password and account, and are fully responsible for all activities that occur under your password or account. You should not share your password with anyone. When accessing your account from a public or shared computer, you should use particular caution so that others are not able to view or record your password or your other information.

Unfortunately, the transmission of information via the internet is not completely secure. Although we do our best to protect your information, we cannot guarantee that information may not be accessed, disclosed, altered, or destroyed by a breach of any of our physical, technical, or administrative safeguards. Any transmission of information is at your own risk. You agree that Gaucher Community Alliance is not liable for the unauthorized release of your information, unless such release was the result of gross negligence or willful misconduct on the part of Gaucher Community Alliance.

Children’s Online Privacy Protection Act (COPPA)

When it comes to the collection of information from children under the age of 13 years old, the Children’s Online Privacy Protection Act (COPPA) puts parents in control. The United States Federal Trade Commission enforces COPPA, which spells out what operators of websites and online services must do to protect children’s privacy and safety online. We comply with all applicable COPPA requirements and do not specifically market our Services to children under the age of 13 years old.

Changes To Our Privacy Policy

At our sole discretion, we may make changes to this Privacy Policy at any time. When changes are made, we will post an updated Privacy Policy on our Site. 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, Gaucher Community Alliance will treat your use as acceptance of the updated Privacy Notice. You are expected to check this page from time to time so you are aware of any changes, as they are binding on you.

Questions and Comments

Gaucher Community Alliance commits to resolve questions and comments about your privacy and our collection and use of your information. Individuals with inquiries or comments should contact Gaucher Community Alliance at: