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Privacy Policy

Online and Mobile Privacy Policy Notice

- Special GDPR Alert -


Dementia Society, Inc., dba Dementia Society of America, & GDPR

The Dementia Society of America is 100% committed to data protection. That’s why we welcome the General Data Protection Regulation (also known as the GDPR), which was adopted by the European Union (EU).

What is the GDPR?

The GDPR is a regulation intended to strengthen and unify data protection for all individuals within the EU. It aims to protect the fundamental right to privacy and the protection of personal data.

Site visitor trust is our absolute top priority. Although our focus is within North America, we know that all website users worldwide care deeply about their privacy and data security. We work with a web platform provider,, hereinafter referred to as “WIX,” and they have implemented the required adjustments to their products, services, and documentation, to ensure compliance with the GDPR. This empowers you to get more control over personal data and gain the tools necessary to protect your information. 


WIX is certified under the EU-US Privacy Shield Framework and the Swiss-US Privacy Shield Framework as set forth by the U.S. Department of Commerce, regarding the collection, use, and retention of personal information transferred from the European Union and Switzerland to the United States, and therefore adheres to the Privacy Shield Principles.

In accordance with the GDPR, site visitors have the right to access their data or "be forgotten" (to be permanently deleted from your databases). WIX has developed the two main tools to help us:

1. Right to access. Click here to request access to your data.

2. Right to be forgotten. Click here to request to be forgotten.

Cookies are small pieces of data stored on a site visitor's browser, usually used to keep track of your movements and actions on a site. In accordance with the GDPR, we must inform our users that we are using cookies on our site. Take a look at the table below to view which cookies our WIX web platform implements (cookie name – retention duration – purpose):

  • SvSession – Permanent – Creates activities and BI

  • hs – Session – Security 

  • incap_ses_${Proxy-ID}_${Site-ID} – Session – Security 

  • incap_visid_${Proxy-ID}_${Site-ID} – Session – Security

  • nlbi_{ID} - Persistent cookie – Security 

  • XSRF-TOKEN – Persistent cookie – Security

  • smSession – Two weeks – Identify logged-in site members

In addition, the Dementia Society of America uses one or more payment processors, e.g., Epic, to handle online donations that originate through our website. Epic, in turn, uses Payment Card Industry Data Security Standards (PCI DSS) compliant processing services. This helps create a secure environment by increasing cardholder data, thus reducing credit card fraud. They regularly perform internal security audits to maintain our ISO/PCI security certifications.

- End of Special GDPR Alert -



Commitment to Privacy


The Dementia Society, Inc., dba Dementia Society of America® (“DSA”), respects the privacy of every individual who uses DSA-owned or operated web Sites, mobile applications, and other online products and services (collectively, "Site(s)") This notice applies to our information collection practices for this Site. Because your privacy is important to us, we provide you with notice and choices about collecting and using your information. To make this notice easy to find, links are provided at the bottom of our homepage and on every page within our web Site. By accessing this Site (or others we own and/or operate), you accept the practices described in this Privacy Notice.


Use of Cookies


We use cookies, small files sent to your web browser and stored on your computer's hard drive, to improve your digital experience. The cookie is used to speed up your access to the Site and the information you wish to see, but it does not contain any personal information. The majority of web browsers accept cookies, but the “help” menu on your browser should give you options for preventing, accepting, or receiving notice of new cookies. However, please be aware that if you block cookies, some web Site functionality may be lost.


Data Collection


We collect two types of information:


1. Standard web server traffic pattern information. General traffic, Site usage, browser information, and length of stay information are collected and stored in log files (see description below). This type of information is shared externally only on an aggregated basis.


Log files are transaction records maintained on web servers to record information such as:


  • Service provider IP addresses

  • Browser versions

  • Referring to web Sites

  • Search terms used

  • The average number of pages requested.

  • The average duration of visit

  • Total visitor traffic


Log files gather information for aggregate use.


2. Personal information. We do not collect personally identifiable information from you unless you provide it to us voluntarily and knowingly. If you personalize a Site, volunteer, make a purchase, request information, or donate, for example, we may collect the following information: first and last name, street address, city, state, zip code, telephone number, email address, and the subject of inquiry.


Personal information may be needed for certain optional online activities:




If we offer Site registration, now or at some point in the future, you may choose to customize the web Site to your needs by becoming a registered web Site user; we retain the preferences you select so that you will not have to reenter the information each time you access our web Site. These preferences may include requests for email, news, information on specific Dementia types, language preferences, and interest group selections (patient, medical professional, volunteer). You can access your profile by entering your user name and password each time you use the web Site. You are not required, however, to enter your name or mailing address.


If you register to participate in a DSA event, such as STEP2RAISE®, using our event registration Site, we may ask you various questions about why you wish to participate. This information is useful for event purposes. Further, if you elect to use our referral service to inform a friend about the event registration Site, we will ask you for your friend’s name and address. We will store this information in order to send your friend a one-time email inviting him or her to visit the Site.




If you choose to make a purchase/donation, our credit card processor(s) collects standard credit card information (card number, card type, expiration date) and keeps a record of your financial transaction. Credit card numbers are held only until the charge can be processed (usually several minutes).




If you choose to donate to our organization, we maintain a record of your contribution. Your financial information will be treated as described above in “Purchases.”




If you submit an online request for DSA products such as free brochures or submit a question through a “Contact” or “Contact Us” query, we may have to gather additional information from you to respond to your request. Such information will vary with the request but often includes name, shipping address, telephone number, and email address.


Public Forums


If you choose to participate in a chat room, discussion board, newsgroup, or another public forum available to our users, please remember that any information you disclose in these areas becomes public information. You should exercise caution when deciding whether or not to disclose your personal information.


Data Use


We limit the use of information provided to us on our Site to the following:


Internal Use


  1. If you do not make a service request, donation, purchase, or otherwise identify yourself, we will have no personally identifiable information about you. We will only use aggregate information derived, in part, from your use of our Site to improve our Site and our service to you.

  2. If you provide personal information, we may enter your name into our constituent database and contact you in order to:

a. Complete voluntary surveys seeking feedback for quality and service improvement purposes.

b. Supply you with information, including Dementia-related health news, DSA programs, events, and services.

c. Request voluntary time or monetary contributions to DSA.

d. Request your participation in a DSA research study.


  3. We collect the email addresses of those who communicate with us by email. Inquiries may be forwarded to the appropriate DSA department for response and may be entered into our constituent database. If your name is entered into the database, we may contact you (see #2a above).


External Use


Your health-related information is privileged and confidential and will not be shared or released to any person, organization, or business entity other than those affiliated with or working in conjunction with DSA as follows:


We sometimes use third parties to provide you with the following services:


  1. We occasionally hire other companies to provide limited services on our behalf. We will only provide those companies the information they need to deliver the service and prohibit them from using that information for any other purpose.

  2. We have relationships with companies that conduct charitable sales promotions and commercial co-ventures that support us in our mission and activities. If you provide us with your mailing address, we may pass your contact information to these companies so that they may ask you if you are interested in receiving their services. Your choice to use their services will benefit us; the amount of money we receive from these entities resulting from your participation is disclosed when you are contacted about the service. You are under no obligation to respond, and the companies are restricted from using your contact information for any other purpose.


Your Options


We respect your privacy and allow you to restrict the internal and external sharing of your personal information. We recognize that you may wish to limit the ways in which we contact you, and we offer the following options:


  • Do not contact me by telephone.

  • Do not contact me by postal mail.

  • Do not contact me by email.

  • Do not share my contact information with other non-profit organizations.

  • Do not contact me with fundraising requests supporting the Dementia Society of America.

  • Do not contact me.


For more information on how to inform us of any desired restrictions, please email us at If you contact us with an opt-out request, all reasonable efforts will be taken to ensure that you will not receive any of the selected communications from us in the future. If you do not wish to opt-out at this time, you may do so at a later date should you so desire.


If you opt back into a specific service, you will receive communication in that manner, regardless of your overall opt-out selections. These services may include newsletter subscriptions or email communication by asking a question using “Contact” or “Contact Us.”




Upon request, we will provide you with the information we maintain about you so that you may request corrections. This information will be sent via postal mail, which we believe is the most secure method of communication. Please contact us by email at or in writing at:


Security and Privacy Requests

Dementia Society of America

PO Box 600

Doylestown, PA 18901


To protect your privacy and security, we will take reasonable steps to verify your identity before providing information or making corrections.


Data Security


We are committed to protecting your personal information and honoring your choices for their intended use. To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we strive to maintain physical, electronic, and administrative safeguards.


We process your financial transactions securely using Payment Card Industry compliant ("PCI") services. Examples of our security measures include physical, electronic, and procedural safeguards; use of strong encryption (e.g., SSL) for transmissions of "purchase" or "donation" information to and from our credit card processor; and restricted access of personally identifiable information.


Inside DSA, data is stored in password-controlled software and/or hardware. Our contractors and volunteers are educated about the importance of safeguarding your information, and we are committed to holding them accountable for protecting your confidentiality. However, such precautions do not guarantee Site is invulnerable to all security breaks. DSA makes no warranty, guarantee, or representation that our Site's use is protected from viruses, security threats, or other vulnerabilities and that your information will always be secure.


Whenever DSA permits an external third party to access personally-identifiable information, appropriate procedures are followed to help ensure that the information is used only for authorized purposes and by authorized persons in a manner consistent with the choices DSA constituents have made under this statement and that the security, integrity, and privacy of the information is maintained. While DSA will employ procedures to help ensure that your information is only used for authorized purposes as described above, we cannot make any guarantees with respect to the actions or policies of such third parties.


Links Within Our Site


Internal Links


Because of the various programs and services at DSA, there are other privacy notices to inform our constituents of policies specific to the activity in which they are participating. Please click on the following link(s) to learn more about:


Dementia Answers® Directory

STEP2RAISE® Dementia & Brain Health Awareness Challenge

External Links


Our privacy policies apply only to your use of a DSA Site. The web Site contains links to other Sites, including Sites that have a special relationship with us. We do not disclose personally identifiable information to those operating linked Sites, and we are not responsible for their privacy practices. Links to other Sites do not imply an endorsement of the materials or policies on those web Sites. You should read the privacy policies of each Site you visit to determine what information the Site may be collecting about you.


Contact Us


This privacy statement will be updated periodically and posted on our Site. It applies only to our online practices and does not encompass other areas of the organization. It applies to the on-line practices of DSA. References to "Dementia Society of America," "DSA," "we," "us," and "our" are references to Dementia Society of America and its affiliates, staff, and volunteers. We reserve the right to change this policy at any time by posting revisions. You agree to review the Online and Mobile Privacy Policy Notice each time you use our Site so that you are aware of any modifications. By accessing or using the Site, you agree to be bound by all of the terms and conditions of the DSA Online and Mobile Privacy Policy Notice as posted at the time of your access or use. If you have any questions about our policy or our compliance, you may send us an email at or write to:


Security and Privacy Requests

Dementia Society of America

PO Box 600

Doylestown, PA 18901


Policy Updates


We reserve the right to update this policy at any time. Any changes will be effective immediately upon the posting of the revised policy.


Updated 1/14/2021

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