This Privacy Policy explains how the Huntington’s Disease Society of America (the “Society”) may collect, use, and disclose information, including Personal Information we obtain through our websites (the “Online Platforms”) as well as information we obtain offline or in any electronic, written, or oral communication

“Personal information” means information that alone or when in combination with other information may be used to readily identify, contact, or locate an individual, such as: name, address, email address, zip code, credit card number, expiration date & security code and/or information regarding your PayPal, Google Wallet or other digital payment accounts, or phone number. Information that has been anonymized so that it does not allow a third party to easily identify a specific individual is not Personal Information.

We encourage you to review this Privacy Policy to fully understand the terms of using our websites.

The following Privacy Policy discloses our information gathering and dissemination practices for this site including:

  • What Personal Information of yours is collected through the site;
  • Who collects such information;
  • How such information is used;
  • With whom your information may be shared;
  • How you can opt out of receiving communications from HDSA;
  • What kind of security procedures are in place to protect the loss, misuse or alteration of information under our control; and
  • How you can contact HDSA about this Privacy Policy, the practices of these websites, or your dealings with these websites.

Collection Methodology and Usage of Information

Our registration forms require users to give us contact information that may include name, email address, format preference (HTML vs. Text), address, interests, and similar information. We do not store sensitive information from our visitors, such as credit card or social security numbers.

We obtain Personal Information about you only if you elect to give us that information. Types of Personal Information we ask you to provide may include your name, address, zip code, telephone number, e-mail address, name of your organization or company, and credit card information where applicable.

We may also obtain Personal Information about you when you

  • choose to connect your social media account to your profile on our websites; we may collect Personal Information from that social media websites. For example, when you connect your Facebook account, we may collect the Personal Information you have made publicly available in Facebook, such as your profile picture, gender, age range, locale, and friend list. We may also obtain other non-public information from the social network websites with your permission, and
  • post on our websites. For example, when you interact with other users by posting messages or uploading photographs, the websites will collect the information you provide in such submissions, including any Personal Information. Any health related information added to your profile may be used to include you as part of related interest groups.

Information collected on the websites:

  • Enables us to respond to your inquiries about volunteering or in participating in HDSA events or fundraising initiatives;
  • Enables online donations;
  • Facilitates purchasing products online that support HDSA; and
  • Enables fulfilling requests for newsletters, periodical and other HDSA communications.

In addition, certain tracking information may be collected as you navigate the websites, including, but not limited to geographic areas. If you are traveling in a vehicle when accessing the websites, your device may send your GPS coordinates. GPS enabled mobile devices can define your location to within 50 feet. We collect this information for various purposes – including to provide you geographically relevant information. We may associate your unique mobile device identifier or mobile application usage information with any Personal Information you provide. We will treat the combined information as Personal Information.

We may use third parties to assist us in the operation of websites and related activities (“Vendors”). Such Vendors provide or perform certain services on our behalf (e.g., host the websites, track the analytics, process credit card payments, provide automated email services, engage security measures, provide customer support, provide GPS location information and perform technical services (e.g., without limitation, maintenance services, database management, web analytics and improvement of the websites, or perform other administrative and back office services.) We may use these vendors to process your usage and Personal Information. We limit such sharing to only the minimum information needed by the Vendor to carrying out the services they are performing for you or for us. We require each Vendor to protect the Personal Information and not to use or disclose the Personal Information for any other purpose.

We may access, preserve, and disclose your Personal Information, other account information, and content if we believe doing so is required or appropriate to: (i) to satisfy or comply with any applicable law, regulation, subpoenas, governmental requests or legal process; (ii) to protect and/or defend the policies applicable to our websites or mobile application, including investigation of potential violations thereof; (iii) to protect the safety, rights, property or security of the Society or any user or any third party; (iv) to protect the safety of the public for any reason; (v) to detect, prevent or otherwise address fraud, security or technical issues; and/or (vi) to prevent or stop activity we may consider to be, or to pose a risk of being, an illegal, unethical, or legally actionable activity. Further, we may use IP address and/or device identifiers, to identify users, and may do so in cooperation with third parties such as copyright owners, ISPs, service providers and/or law enforcement, including without limitation, disclosing such information to third parties, all in our discretion. Such disclosures may be carried out without notice to you.

The Huntington’s Disease Society of America will only use your information internally to maintain communication.

Information Never Shared With Third Parties

The Huntington’s Disease Society of America will never rent, sell or distribute your information to any third party. (We may allow access to other data collected by the Online Platforms to enable the delivery of online advertising on these websites, or otherwise facilitate transmittal of information that may be useful, relevant, valuable or otherwise of interest to you.)

Opting Out from Receiving HDSA Communications

If your information is currently being used to send you marketing communications, you can correct or update the information, or opt out of communications at any time. You may contact the Society at any time by calling 212-242-1968, in writing at the Huntington’s Disease Society of America / 505 Eighth Avenue, Suite 902 / New York, NY 10018 or e-mail If you wish to unsubscribe from future marketing communications, you can email the Society with the word “Unsubscribe” in the subject line. All marketing e-mail communications from HDSA have an opt-out / unsubscribe selection.

Online and Offline Donations

This policy applies to all websites users and donors, including information received by the Society online and offline, on any Society websites or mobile application, as well as any electronic, written, or oral communications.

When you make a donation to the Society, we collect personal information from you that may include: your name, address, telephone number, e-mail address and credit card information. We use this information for purposes such as sending you a receipt and thanking you for your donation as well as informing you about news, upcoming fundraising events and other activities of the Society.

When you send a donation in honor or in memory of someone and request that an acknowledgement be sent to another individual or a family, we will use the name and address of that individual or family for acknowledgement purposes only.

We process your donation securely using measures that comply with the Payment Card Industry Data Security Standard (“PCI DSS”), the credit card industry’s most stringent security standard. Examples of our security measures include: physical, electronic, and procedural safeguards; sophisticated security monitoring tools; documented security policies; use of strong encryption (e.g., TLS) for credit card processing; restricted access to Personal Information; and we perform periodic security audits to confirm the strength of our security program.

Internet Protocol Addresses

We collect IP addresses from all visitors to our websites. An IP address is a number that is automatically assigned to your computer by your internet service provider when you use the Internet. We use IP addresses to help diagnose problems with our server, administer our websites, analyze trends, track users’ movement, gather broad demographic information for aggregate use in order for us to improve the websites, and deliver customized, personalized content. IP addresses are not linked to Personal Information.

Use of “Cookies”

Our websites may use cookies to enhance your experience while using our websites. Cookies are pieces of information that some Web website transfer to the computer that is browsing that web website and are used for record-keeping purposes at many websites. Use of cookies makes Web-surfing easier by performing certain functions such as saving your passwords, your personal preferences regarding your use of the particular website and to make sure you don’t see the same ad repeatedly. Many consider the use of cookies to be an industry standard.

Your browser is probably set to accept cookies. However, if you would prefer not to receive cookies, you can alter the configuration of your browser to refuse cookies. If you choose to have your browser refuse cookies, it is possible that some areas of our websites will not function properly when you view them.


If a user elects to use our referral service for informing a friend about our websites, we ask them for the friend’s name and email address. The Huntington’s Disease Society of America will automatically send the friend a one-time email inviting them to visit the website. The Huntington’s Disease Society of America stores this information for the sole purpose of sending this one-time email.

Other Websites

Our websites contains links to other websites. Please note that when you click on one of these links, you are entering another website for which the Huntington’s Disease Society of America has no responsibility. We encourage you to read the privacy statements on all such websites as their policies may be different than ours.

Contacting HDSA

If you have any questions about this Privacy Policy, the practices of these websites, or your dealings with these websites, you can contact:
Huntington’s Disease Society of America
505 Eighth Avenue, Suite 902
New York, NY 10018

You can also send an email to: Kindly enter “Privacy Policy” in the subject line.

Huntington’s Disease Society of America reserves the right at any time and without notice to change this Privacy Policy simply by posting such changes on our websites. Any such change will be effective immediately upon posting.