Privacy & Terms of Use

Privacy Policy

We at the Parkinson's Foundation (the “Foundation”) are committed to respecting the privacy of our website visitors and app users. This page describes our privacy policy regarding the information we collect from you during your visit to our website or use our apps, how we may use your information, and how we will protect the information that you choose to provide us. Our privacy policy has been drafted in accordance with the Better Business Bureau Wise Giving Alliance's Standards for Charity Accountability. Our website is not intended for children, and we do not knowingly collect data on children under 13. We comply with the federal Children’s Online Privacy Protection Act of 1998 (COPPA).

Personally Identifiable Information

The Foundation does not require that you provide personally identifiable information directly to us in order to use our website (but as identified below in the “Cookies and Pixels” section of this policy, we use cookies and tracking pixels when you contact our website or use our apps).  Personally identifiable information includes your name, address, telephone number, e-mail address and any other information which might be used to identify you individually. You will only be required to provide personally identifiable information to us while using the site in the following six situations: (1) making a donation, (2) ordering from our online store, (3) downloading resources from our PD Library, (4) communicating with the Foundation, (5) participating in our online forums, and (6) registering for an event, each of which is addressed in greater detail below. 

Use and Disclosure of Personally Identifiable Information

If you decide to support the activities of the Foundation by making a donation (which can be tax-deductible), order materials from our online stores, download resources from our PD Library or register for an event, we will collect the information needed to complete the transaction.  If you contact the Foundation, we will collect the information necessary to respond to you and also will receive any information you disclose in your message. If you communicate with the Foundation, including through use of our AI Assistant, we may retain the information you provide to us in order to analyze and improve these services or other Foundation activities. 

When you are making a donation, ordering from our online store, downloading materials from our PD Library, contacting the Foundation or registering for an event, we will clearly disclose how we intend to use the information that you provide on the page in which it is collected.  In every case, we will take reasonable precautions to prevent your personal information from being intercepted by any third party using standard web techniques, including encryption and firewalls to protect the data.  When the Foundation receives personally identifiable information as described herein, we may use it for additional purposes related to the Foundation.  For example, we may use this information to contact you to provide you with information we believe may be of interest to you. We may also use your information for compiling data and analyses to better understand and serve your needs.  The Foundation also compiles data to evaluate our performance and measure how well we are accomplishing our mission. These uses by the Foundation may involve disclosure of your personally identifiable information to third party contractors of the Foundation that assist the Foundation in carrying out these activities.

We also offer discussion forums (“Forums”) where site visitors can exchange ideas and discuss issues with healthcare providers and allied professionals.  If you provide personally identifiable information in one of our online Forums, you do so at your own risk.  The Foundation cannot be held responsible for personal information posted in the online Forums.  The Forum page contains a disclaimer that also warns of this risk.

Personally identifiable information will never be sold or licensed to any third parties unless the user is first notified and expressly consents to such sale or license (but as noted below in the “Donor Privacy Policy” section of this policy, we may share names and email addresses of donors through a cooperative database and, as noted below in the “Use of Cookies and Pixels” section, third parties may receive your computer or device information through your interactions with our website or apps).  No other party will be provided with a user’s personally identifiable information, other than the Foundation’s successors and assigns, and its vendors bound by non-disclosure agreements, without the express consent of the user.

Donor Privacy Policy

The Foundation periodically shares the names and mailing addresses of our donors through a cooperative database maintained by one of our vendors in order to build our base of support. You may request to be taken off the lists we exchange at any time by emailing donorservices@parkinson.org and we will promptly honor that request.

Use of Cookies and Pixels

Like most websites, the Foundation's website may store information on your computer in a small file called a "cookie." Cookies are small text files or data placed by your web browser on your computer or mobile device to store information that allow a website to recognize whether a certain computer or device has been used to visit the site in the past. Cookies enable websites to keep track of online patterns and preferences and make the personalization of web experiences possible. Cookies are used to improve the user experience by providing continuity in your browsing the site.

The Foundation also uses pixels, which are also called web beacons or clear GIFs, to collect information about your interactions with our website, apps, emails, and advertisements. These technologies help us understand user behavior, measure the effectiveness of our marketing campaigns, and improve our services.  Pixels are small graphic files embedded in web pages or emails that allow us to track certain user activities, such as whether an email was opened or a specific page was visited. 

We use pixels to monitor and analyze the performance of our website and marketing campaigns; personalize content and advertisements based on your interests and browsing behavior; track user engagement across different platforms and devices; and, improve our services and user experience.  Pixels also may transmit your information to third parties, such as Google and Meta.  These third parties may use the information to provide or facilitate targeted advertisements and analytics services, and their use of your information may also be subject to their own privacy policies.

You can control the use of pixels and similar technologies through your browser settings or by using tools to block tracking. Please note that disabling these technologies may affect the functionality and personalization of our services.

AI Assistant

Our AI Assistant provides users with general information and support related to Parkinson’s disease and the Foundation.  The information provided by the Foundation’s AI Assistant is for general educational purposes only and must never be relied upon to make any decision related to the medical or health care of any person.  It is not medical advice and is not intended to replace advice from any qualified healthcare provider.  We disclaim any liability related to the AI Assistant and do not guarantee that it is up to date, complete, completely accurate, or applicable to any individual person’s circumstances.  The Foundation’s AI Assistant operates based on the information you voluntarily provide during your conversation with it.  We may retain information you provide to our AI Assistant and use it to improve the service or other Foundation activities.  We may share the information you provide with our third party service providers who assist the Foundation in improving its services and other activities.[DL2.1]  Except as noted in this section, we don’t use or disclose any information that you provide via the Foundation’s AI Assistant.

Use of the Online Forum

The Foundation website includes several discussion Forums.  By participating in the Forums, users agree to send and receive messages that are appropriate and related to the Forum topic. The following actions represent examples of unacceptable practices, and may result in the Foundation taking action (including, but not limited to, banning users from participating in Forums) against violators: defaming, harassing, threatening, or otherwise violating the legal rights of others; violating the privacy rights of others; misrepresenting one's identity or background; posting any defamatory, infringing, obscene, false, or unlawful material; selling, advertising, or exchanging any goods or services unless expressly allowed; posting any copyrighted material of a third party.  This list is not exhaustive, is only intended to provide some examples of unacceptable practices, and may be changed at any time with or without prior notice. The Foundation may alter or remove any messages or postings at our discretion, including those we deem to be inappropriate or offensive. Please do not post personally identifiable information in the Forums.  The Foundation cannot be held responsible for the misuse or appropriation of a user’s personally identifiable information that has been posted to a Forum.

Third Party Fitness App Data

The Foundation’s apps may access data from Apple Health, Android Health Connect, Garmin, Strava, and Fitbit to support fitness-related features. The data we receive is limited to fitness activity only—specifically, workout types and durations, steps, and distance. This information is used solely to credit users with activity rewards related to their participation in nonprofit fundraising campaigns.  We do not otherwise collect or share this health record data. No other personal health record information beyond the activity types stated above is accessed, stored, or transmitted by the Foundation via its website or its apps.  Users retain full control over their connection to the third party fitness apps and may choose to connect or disconnect at any time through the Activity Tracking screen in the app. If a user would like to remove their account and associated user data, including activity tracking, if applicable, they can go to http://support.nuclavis.com and submit a formal request.

Links To Other Sites

As a resource to our visitors, the Foundation may provide links to other websites. Additionally, links to other sites may be posted in the Forums. Links posted in the Forums are not screened by the Foundation and users should only follow such links at their own risk.  For those links that the Foundation posts on its website, we try to carefully choose websites that we believe are useful and meet our high standards for accuracy and relevance. However, because website design and content can change so quickly, we cannot guarantee the standards of every website to which we link. Likewise, we are not responsible for the content of any non-Foundation site. We also cannot guarantee the privacy policies of these other sites and suggest you check the privacy policies of those sites directly and contact the operators of those websites directly if you have any questions about their practices. 

Non-Parkinson's Foundation Products and Resources

Any reference to a commercial or noncommercial product, process, service, or company on our website is not an endorsement or recommendation by the Foundation of such product, process, service, or company.

The Foundation does not endorse or recommend products, services, or manufacturers. The Foundation assumes no liability whatsoever for the use or contents of any product or service mentioned on its website.

Communications from the Foundation

If you wish to stop receiving any e-mail or other communications from the Foundation or if you have submitted personally identifiable information through a Foundation website and would like to have that information deleted, please notify us and it will be done promptly.  Click on the "contact us" link in the navigation bar to contact the Foundation.

Data Security

The Foundation takes data security seriously.  Sensitive data, including data that relates to health or other information of individual persons that could be linked to a personal identifier, account or verification of the individual’s identity, collected by the Foundation is stored behind a firewall and protected using secure encryption technologies.  While no security steps can offer absolute protection, we utilize state-of-the-art, industry-standard protocols to prevent unauthorized access to the sensitive information that we hold.  We limit access to sensitive data to those Foundation personnel with a need to know it. We educate our staff about their duty to protect your privacy and provide training regarding the policy described herein.

Users Outside the United States of America

Individual persons interacting with the Foundation consent to transfer of their information to the United States of America, which may have laws and practices relating to personal information that differ from and are not as favorable to those for individual persons in other countries. 

The Foundation is a U.S.-based organization and formulates its privacy policy and practices to comply with U.S. law.  The Foundation will apply the terms and conditions of this policy to any of your personal information that it receives or collects.  The Foundation does not intend to subject itself to any legal authority outside the United States of America.  

The laws of the country from which you interact with the Foundation may include different or additional protections for you.  If you wish to notify the Foundation that you believe you have different or additional protections than the ones identified in this policy and you wish to exercise those rights, for example to access, correct, or delete your data, or other rights related to your data,  please contact the Foundation at: contact@parkinson.org.

For example, residents of the European Economic Area (EEA), Switzerland, and the United Kingdom (U.K.), in general, have the following rights:

  • The right to access - You have the right to request copies of your personal data. We may charge you a small fee for this service.
  • The right to rectification - You have the right to request that that we correct any information you believe is inaccurate. You also have the right to request that we to complete information you believe is incomplete.
  • The right to erasure - You have the right to request that we erase your personal data, under certain conditions.
  • The right to restrict processing - You have the right to request that we restrict the processing of your personal data, under certain conditions.
  • The right to object to processing - You have the right to object to our processing of your personal data, under certain conditions.
  • The right to data portability - You have the right to request that we transfer the data that we have collected to another organization, or directly to you, under certain conditions.
  • The right not to be subject to solely automated individual decision-making, including profiling with legal or similarly significant effects.

If you make a request in regard to any of the foregoing, we have one month to respond to you.  You also may have the right to lodge a complaint with the data protection authority that has jurisdiction over your place of residence.

Residents of the EEA, Switzerland and the U.K. also have the right to know that the Foundation may process your personal information for any of the following reasons:

  • The processing is necessary to perform our contractual obligations, such as to provide you with services.
  • You have given your prior consent, which you may withdraw.
  • The processing is necessary for our legitimate interests, such as improving, personalizing, and developing our services, marketing new features or products that may be of interest, or promoting safety and security. 
  • The processing is necessary to comply with a legal obligation.

Logo Usage

Use of the Foundation’s registered trademarks (logos) without the express written permission of the Foundation is prohibited. Please send written requests or questions regarding usage of the logo to Leilani Pearl at lpearl@parkinson.org.

Cancellation Policy

In the event you wish to cancel a recurring credit card payment, please call 1-800-473-4636, email us at contact@parkinson.org or write to the attention of Donor Services, Parkinson’s Foundation, 5757 Waterford District Drive, Ste 310, Miami, FL 33126, including your name, address, details of the amount donated, date of the donation, the reason for the request, the card number, expiration date and ccv number.

Changes and Access

The Foundation reserves the right to make changes to this policy without prior notice.  Changes to this policy may be made as a result of internal audits of the Foundation’s information practices as well as to comply with evolving legal and regulatory requirements.  We will include dates of implementation of any changes to this policy. Please check this page periodically to review for any changes that may have been made. The Foundation reserves the right to deny access to its website and/or apps for any reason not prohibited by law. 

Contact Us

If you have specific questions or concerns about the Foundation's privacy policy, please contact us at the following address:

5757 Waterford District Drive, Ste 310
Miami, FL 33126
Toll-free Helpline: 1-800-4PD-INFO (473-4636)
Fax: (305) 537-9901
E-mail inquiries: contact@parkinson.org

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