APDA’s Privacy Policy
American Parkinson’s Disease Association (“APDA,” “we” or “us” or “our”), understands your concerns about privacy and how your information is used and safeguarded, and we want to provide you with more information on these topics. This Privacy Policy describes the practices, policies and procedures related to the website located at www.apdaparkinson.org (the “Website”), including the types of personal information we collect on the Website, how we may use that information, with whom we share it, and the choices you have regarding our collection, use and disclosure of your information. Please note that this Privacy Policy applies only to our online information-gathering and dissemination practices and does not apply to any of our practices conducted offline. By visiting the Website, you are accepting the practices, policies and procedures described herein, and you are further indicating that you agree to be bound by the terms of this Privacy Policy. If you do not agree to the terms of this Privacy Policy, please do not visit or use the Website. We may update this Policy from time to time, so please check this Policy periodically for changes. If you have any questions about this Privacy Policy, please do not hesitate to contact us at apda@apdaparkinson.org.
SUMMARY
The notifications provided by this Privacy Policy include:
- What personally identifiable information we collect through the Website.
- How we use the information we collect.
- With whom the information may be shared.
- The kind of procedures we employ in an effort to hinder the unauthorized access, use or disclosure of information you provide to us.
- Information related to third-party websites.
- The laws that apply to those accessing the Website.
- How you can learn about changes to the Privacy Policy.
- How you can amend the information we collect on you.
- Special provisions related to the Colorado Privacy Act.
- Rights related to the European Union’s General Data Protection Regulation.
THE INFORMATION WE COLLECT
Personal Information You Provide and How It Is Used
When you visit our Website, you may provide us with personally identifying information (such as name, address, e-mail address, telephone number, and/or credit/debit card information) and other information on a voluntary basis, as more particularly described below. We do not knowingly collect sensitive information, such as Social Security numbers. Please do not send sensitive, personal or confidential information to us directly through the Website, or by email to any of the contact email addresses listed on the Website.
Processing of Payment Transactions, General Donations
In order to process contributions and purchase transactions made through www.apdaparkinson.org and charge your credit card, our third-party payment processor, Salsa Labs, requires that you provide certain personal information. Such information includes your name, billing address, email and credit card information. APDA is not affiliated with Salsa Labs and is not responsible for Salsa Labs’ privacy practices or procedures. Salsa Labs has informed us that it takes various precautions to protect your information, which may include use of the Payment Card Industry (PCI) Data Security Standard (DSS), and that Salsa Labs has implemented procedures to ensure that it is in compliance with the PCI-DSS, currently available at http://www.pcisecuritystandards.org. Additionally, Salsa Labs has informed us that it also undergoes annual re-certification to achieve PCI Level 1 status. While APDA does not store your credit card information, some or all of the information you provide may be retained by Salsa Labs for a period of time. Any information that you provide in conjunction with, or related to, a contribution transaction, will be treated in accordance with Salsa Lab’s privacy policy, located at https://www.salsalabs.com/privacy-policy, and we recommend that you review this policy for additional information.
Processing of Payment Transactions, Chapters
Certain APDA chapters may accept donations directly through their chapter-specific websites. In order to process your contribution to a chapter and charge your credit card, you will be required to provide certain information to QGive, which processes chapter contributions. Such information includes your name, billing address, email and credit card information. APDA is not affiliated with QGive and is not responsible for QGive’s privacy practices or procedures. While APDA does not store your credit card information, some or all of the information you provide may be retained by QGive for a period of time. Any information that you provide in conjunction with, or related to, a contribution transaction, will be treated in accordance with QGive’s privacy policy, located at http://www.qgiv.com/about/privacy-policy.php, and we recommend that you review this policy for additional information.
Fundraising Events
The Website provides you with the ability to host online fundraising campaigns, to join fundraising campaigns started by others as a participant, and to make a contribution in support of a participant’s fundraising efforts, powered by the Donor Drive peer-to-peer fundraising platform. When you host an online fundraising campaign or join an existing campaign, you will be asked to provide certain personally identifying information, including your name, email address, mailing address, and phone number, as well as any other information that you voluntarily provide in connection with the creation of your campaign or your registration. When you make a contribution to support a participant’s fundraising efforts, Donor Drive requires that you provide certain personally identifying information, including your name, billing address, email address and credit card information, so that Donor Drive may process your contribution through its payment processor. APDA is not affiliated with Donor Drive and is not responsible for Donor Drive’s privacy practices or procedures. Some or all of the information you provide to Donor Drive may be retained by Donor Drive, or by Donor Drive’s payment processor for a period of time. Any information that you provide through the Donor Drive peer-to-peer fundraising platform will be treated in accordance with Donor Drive’s privacy policy and practices. For more information, please see Donor Drive’s privacy policy, located at http://www.donordrive.com/privacy-policy/.
Publications
You may order certain print publications through the Website by providing your name and mailing address, and optionally providing your email address. We will use this information to send you the requested publications. We will also add your contact information to our mailing list. You may opt out of receiving future communications from us at any time by clicking the “Unsubscribe” link in any of our emails.
Ask the Doctor
When you use the “Ask the Doctor” feature, you will be asked to provide your email address, as well as your question. Our staff healthcare professionals will only use this information to respond to your questions, and we do not store this information for longer than necessary to respond to your question. This information will be destroyed after the question has been answered and is only seen by our Scientific & Medical Affairs staff. Any questions or concerns regarding your information may be sent to apda@apdaparkinson.org Please note that our staff healthcare professionals cannot recommend treatment or make diagnoses, but can respond to general questions. We ask you not to transmit your own, or another person’s, sensitive or personal health information through this feature to us, and we encourage you to direct any specific questions to your personal physician or healthcare provider.
Sharing Your Story
We offer visitors the option to share a story related to diabetes. Although last names are not published with the story, any information about yourself or others that you write about will be publicly displayed.
Research Opportunities
The Website at any given time may list opportunities to apply for research funding. If you choose to apply to any of these opportunities you will be required to provide certain personally identifying information about yourself, including your name and contact information. Additionally, in some instances you may be required to register through our Grant Portal, powered by Foundant Technologies, and in registering you will be required to provide us with certain personally identifying information. Any information that you provide through the Foundant platform will be treated in accordance with Foundant’s privacy policy and practices. For more information, please see Foundant privacy policy, located at https://www.foundant.com/privacy-policy/
Event Registration
When you RSVP for certain events on the Website, you will be asked to provide your name and email address, and will be provided with the option to provide your company name, mailing address, and your guest’s first and last name. We will use this information to confirm your RSVP and communicate with you regarding your attendance at the event.
Sweepstakes/Promotions
If you choose to participate in a sweepstakes or other promotion (“Promotions”) offered through the Website, we may collect additional personally identifying information from you, which will be used to manage your participation in our Promotions, and may be shared with third parties, including Promotion sponsors or partners.
Mailing Lists
When you register an account, make a contribution, or take certain other actions on the Website, you will be added to our mailing list to receive occasional email updates, unless you choose to opt-out by unchecking the box next to the words “Please send me e-updates with the latest information on Parkinson’s Disease.” You may also sign up independently to join our mailing list, and we will ask you provide your email address and your name. If at any time you would like to unsubscribe from our email list, you may do so by clicking on the “unsubscribe” link located at the bottom of all our mass emails or by emailing apda@apdaparkinson.org with “unsubscribe” in the subject heading and we will remove your name from our lists. We will act quickly to implement such requests but please note there may be time lags of up to a month to remove names from our database. To reach us offline, please contact us via mail at: APDA, 135 Parkinson Avenue, Staten Island, NY 10305.
Blogs/Social Media
We provide the ability for you to comment on our blogs and on other portions of the Website. In order to leave a comment on one of our blogs or on other portions of the Website, you will be required to provide your name and email address, and you will have the option to provide additional personally identifying information. We also provide the option for you to connect with us through various social media outlets and platforms, and we may promote your activities on social media by “retweeting” or “sharing” content that you choose to make available to us.
Personal and Non-Personal Information We Collect by Automated Means and How We Use It
APDA and third parties with whom we have contracted to provide services for us collect certain personal and non-personal information by automated means when you visit the Website, including when you access the Website via a mobile device. We collect this information through various means such as “cookies,” “web beacons” and IP addresses, as further explained below.
Personal information collected may include your device’s phone number, and your location information, such as the real-time geographic location of the device you use to access the Website.
Non-personal information we collect may include the numbers and frequency of visitors to the Website, pages visited and similar data, information about the devices our visitors use to access the Internet (such as the IP address and the device, browser and operating system type), URLs that refer users to our Website, dates and times of visits to our Website, actions taken on our Website (such as page views and site navigation patterns), general geographic locations (such as country and city) of our visitors, and, search terms that visitors use to reach our Website. If gathered, this data is used in the aggregate, and not in a manner that is intended to identify you personally. This type of aggregate information may be shared with third parties at any time.
We may use information collected by automated means to operate, evaluate and improve our business and the services we offer, to analyze and enhance our marketing communications and strategies (including by identifying when emails sent to you have been received and read), to analyze trends and statistics regarding visitors’ use of our sites, mobile applications and social media assets, and the actions visitors make on our sites, to protect against and prevent fraud, unauthorized transactions, claims and other liabilities, and manage risk exposure, including by identifying potential hackers and other unauthorized users, and to enforce the Terms of Use for our Website.
Cookies
A cookie is a piece of information that a web server may place on your computer when you visit a website. Cookies are commonly used by websites to improve the user experience. Many cookies last only through a single website session, or visit. Others may have an expiration date, or may remain on your computer until you delete them. APDA uses “session cookies” so that we can properly verify a user’s identity as they move from one page to the next. We may also use cookies for other purposes, such as to identify and authenticate visitors, to maintain continuity during a user session, to gather data about the usage of our website for research and other purposes, or to store a user name or encrypted identification number so that you do not have to provide this information every time you return to our Website.
Most browsers will tell you how to stop accepting new cookies, how to be notified when you receive a new cookie, and how to disable existing cookies. Please note, however, that without cookies you may not be able to take full advantage of all the features on our Website. Our cookies do not gather personally identifiable information. In some cases, APDA may also use another company to operate web servers for our Website. APDA uses the cookie information gathered by these companies in the same manner as stated in this Privacy Policy.
Web Beacons
Certain pages on the Website contain “web beacons” (also known as Internet tags, pixel tags and clear GIFs). These web beacons allow third parties to obtain information such as the IP address of the computer that downloaded the page on which the beacon appears, the URL of the page on which the beacon appears, the time the page containing the beacon was viewed, the type of browser used to view the page, and the information in cookies set by the third party. Web beacons also may be used to track whether you have opened an HTML email. When the email is opened, a part of the code that makes up the HTML page calls a web server to load the web beacon that then generates a record showing that the email has been viewed. Web beacons may also recognize when the email was opened, how many times it was forwarded and which URLs (links within the email) were clicked.
IP Addresses
When you visit and interact with the Website, APDA and third parties with whom we have contracted to provide services for us may collect Internet Protocol addresses (each an “IP Address”), as well as browser type, Internet service provider (ISP), referring/exit pages, platform type, date/time stamp, and page navigation. An IP Address is a unique identifier number that certain electronic devices use to identify and to communicate with each other on the Internet; your Internet Service Provider automatically assigns an IP Address to the computer that you are using. We gather this information to track web site visitor movement in the aggregate, and to gather broad demographic information for aggregate use. Our goal in gathering this information is to learn how our customers and the public are using our service. We may use this information to enhance our Website or for other lawful purposes.
Do Not Track Notice
Some web browsers incorporate a “Do Not Track” feature that signals to websites that you visit that you do not want to have your online activity tracked. How browsers communicate and respond to the Do Not Track signal is not yet uniform. For this reason, like many websites, the Website does not currently respond to or alter practices in response to a Do Not Track signal. Please note that third parties may collect personal information about your online activities over time and across different websites when you visit our Website or other online websites and services. To find out more about “Do Not Track,” you can visit http://www.allaboutdnt.com.
HOW WE MAY SHARE YOUR INFORMATION
We may disclose all of the information (described herein) that we collect, as stated in this Privacy Policy, including in accordance with the terms set forth in this section. Please note that like many organizations, we use specialist service providers to help run parts of our operations. For example, we contract with Google to provide marketing and data aggregation and analysis services and with Salsa Labs and Donor Drive to provide payment processing services. From time to time, these third-party service providers may require access to our database, which may contain personally identifying information belonging to visitors to our Website. Our agreements with our third-party service providers require that they keep this information confidential.
Unless otherwise stated herein, we do not reveal personally identifiable information about you to third parties for their independent use unless: (1) you expressly authorize APDA or an APDA affiliate to do so, (2) it is necessary to allow APDA and its service providers or agents, including but not limited to, our third-party payment processors, to provide services on APDA’s behalf, (3) it is necessary in order to provide products or services to you, (4) the information is disclosed to entities that perform marketing or data aggregation services for APDA, (5) it is necessary in connection with a sale of all or substantially all of the assets of APDA or the merger of APDA into another entity or any consolidation, share exchange, combination, reorganization, or like transaction in which APDA is not the survivor, (6) APDA is required or permitted to do so for any or all of the following reasons: (i) to comply with a subpoena, legal process, government request or any other legal obligation, (ii) to prevent, investigate, detect, or prosecute criminal offenses or attacks on the technical integrity of the Website or our network, and/or (iii) to protect the rights, privacy, property, business, or safety of APDA, its affiliates, subsidiaries, partners, directors, officers, employees, or members, visitors to the Website, or the general public.
HOW WE ATTEMPT TO SAFEGUARD YOUR INFORMATION
We maintain administrative, technical and physical safeguards for the Website designed to protect against loss, misuse or unauthorized access, disclosure, alteration or destruction of the personal information that we collect from you. For example, we use Secure Sockets Layer encryption to protect certain transaction information while in transit. We also restrict access to personal information collected about you on the Website to our employees, those who are otherwise specified in this Privacy Policy, or others who need to know that information to provide services to you or in the course of conducting our business operations or activities. However, no website can guarantee security. Thus, while we have established and maintain what we believe to be reasonable procedures to protect the confidentiality, security, and integrity of personally identifying information obtained through the Website and we strive to protect your personal information, we cannot ensure or warrant the security of any information you transmit to us. Therefore, you understand, acknowledge, and agree that you transmit certain personal information over the Website at your own risk.
CHILDREN’S PRIVACY
We do not knowingly collect, use, or disclose personally identifiable information about visitors younger than 13 years of age. If you are under the age of 13, you are expressly prohibited from accessing/viewing the Website. If you are the parent or guardian of a child under 13 years of age and believe that they have disclosed personally identifiable information to us, please contact us at apda@apdaparkinson.org so that we may delete your child’s information.
THIRD PARTY WEBSITES
We may provide links to third-party websites as a service to you or in order to provide you additional information related to the transactions and activities that occur on the Website. Please be aware that we cannot control and are not responsible for the information collection, use, and disclosure practices of such websites. We encourage you to review and understand the privacy practices and policies, if any, of these websites before providing any personally identifying information to them. We are not responsible for the content or information of these websites, any products or services that may be offered through these websites, or any other use of the linked websites.
FUTURE REVISIONS
We reserve the right to revise this Privacy Policy at any time by updating this posting. Please check back regularly and to see if there have been any changes to this policy, which you can determine by reviewing the Effective Date listed below. By continuing to use the Website after those changes become effective, you agree to be bound by the revised Privacy Policy.
SPECIAL NOTICES
Notice to California Residents
California Civil Code Section 1798.83 permits Website users who are California residents to request and obtain from us once a year, free of charge, information about the personal information (if any) we disclosed to third parties for direct marketing purposes in the preceding calendar year. If applicable, this information would include a list of the categories of personal information that was shared and the names and addresses of all third parties with which we shared information in the immediately preceding calendar year. If you are a California resident and would like to request this information, please contact us or write to us at apda@apdaparkinson.org.
HOW TO CONTACT US
If you have any questions or comments about this Privacy Policy, or if you would like us to update or correct information we have about you or your preferences, please contact us by email at apda@apdaparkinson.org or by phone at 800-223-2732. You also may write to us at:
American Parkinson Disease Association
PO Box 61420
Staten Island, New York 10306
SPECIAL NOTICE TO COLORADO RESIDENTS
This notice describes how we collect, use, and share your personal data in our capacity as a “Controller” under Colorado’s Privacy Act (“CPA”) and the rights that you have with respect to your personal data, including sensitive personal data. For purposes of this section, “personal data” and “sensitive data” have the meaning given in the Colorado Privacy Act and do not include information excluded from the CPA’s scope. The personal data we collect about you will depend upon how you interact with our Sites and the information you voluntarily provide us. Accordingly, we may not collect all of the below information about you. In addition, we may receive information about you from other sources (such as firms that use public data to make predictions) or we may collect and/or use additional types of information after providing notice to you and obtaining your consent to the extent such notice and consent is required by the CPA. To the extent that we collect personal data subject to the CPA, that information, our practices, and your rights are described below.
What Personal Data Do We Collect, Process, and Share?
Consistent with the ”Information We Collect” and “How We Use Information” sections in our Privacy Policy, the below information provides additional detail about certain information that is linked or reasonably linkable to an identified or identifiable individual consumer (“Personal Data”) we process, the purposes for processing this data, and the Personal Data that we share with third parties as defined by the CPA. Please carefully review our Privacy Policy for complete information about our data privacy practices.
Personal Data We Collect
Personal data means any information that is linked or reasonably linkable to an identified or identifiable individual. Personal data does not include de-identified data or publicly available information. We may collect your name, phone number(s), postal address(es), and email address(es). We may collect online activity data, as further described above. Our service providers may collect a bank account number, credit card number, debit card number, or any other financial information you submit to process payment
Purpose for Processing Personal Data
To fulfill or meet the reason for which the information was provided to us; to provide the services you requested; to manage payments, fees, and charges; to provide you with support and respond to your inquiries; To provide you with email alerts, event registrations, and other notices concerning the work we do, or events or news that may be of interest to you; To respond to law enforcement requests and as required by applicable law, court order, or governmental regulations; To personalize your website experience; To improve and deliver content and product and service offerings relevant to your interests through our website, third-party sites, and via email or text messages.
Third Parties with Which We Share Personal Data
Service providers such as payment processors and other third party vendors, as further described above.
Profiling Information We Collect
Profiling Information means any form of automated processing performed on personal data to evaluate, analyze, or predict personal aspects related to an identified or identifiable individual’s economic situation, health, personal preferences, interests, reliability, behavior, location, or movements. We do not profile as defined by the Colorado Privacy Act.
Sensitive Data We Collect
Sensitive data means personal data that includes data revealing (A) racial or ethnic origin, religious beliefs, mental or physical health condition or diagnosis, sex life, sexual orientation or citizenship or immigration status, (B) genetic or biometric data for the purpose of uniquely identifying an individual, or (C) personal data from a known child. We do collect any data defined as sensitive data by the CPA.
What Are My Rights?
Right to Access Information/Correct Inaccurate Personal Data
You have the right to request access to Personal Data collected about you and information regarding the purposes for which we collect it and the third parties and service providers with which we share it. Additionally, you have the right to correct inaccurate or incomplete Personal Data. You may submit such a request as described below.
Right to Obtain a Copy of Personal Data
You have the right to request a copy of the Personal Data that you previously provided to us as controller in a portable format no more than two times per calendar year. Our collection, use, disclosure, and sale of Personal Data is described in our Privacy Policy.
Right to Deletion of Personal Data
You have the right to request in certain circumstances that we delete any Personal Data that we have collected directly from you or from a third party. You may submit such a request as described below. We may have a reason under the law why we do not have to comply with your request or why we may comply in a more limited way than you anticipated. If we do, we will explain that to you in our response.
Right to Opt Out
You have the right to opt out of processing personal data for the purposes of and as defined by the CPA: (A) Targeted Advertising based on your Personal Data obtained from your activities over time and across websites or applications; or (B) The Sale of Personal Data to third parties. We do not profile or sell data as defined by the Colorado Privacy Act.
Right to Appeal
If we decline to take action in any request that you submit in connection with the rights described in the above sections, you may ask that we reconsider our response by sending an email to the same email box (referenced in section below) from which you receive the decision. You must ask us to reconsider our decision within 45 days after we send you our decision. You may contact the Attorney General if you have concerns about the appeal.
How Do I Exercise My Rights?
You may submit a request to exercise your rights above by email at adpa@apdaparkinson.org or phone us at 800.223.2732.
Authentication Process
To protect consumers’ Personal Data and to comply with the CPA, we will use an authentication process to confirm your identity before we act on your request. You or your authorized agent may make an authenticated consumer request related to your Personal Data. If you use an authorized agent to submit a request on your behalf, we may require that you (1) provide the authorized agent written permission to do so and (2) provide us a copy of the authorization or a copy of a power of attorney. In authenticating requests, we employ reasonable measures to detect fraudulent requests and prevent unauthorized access to your personal information. To meet our obligations, we are required to authenticate your identity and the identity of your authorized agent, if the request is submitted via an agent, by associating the information provided in your request to personal data previously collected by us. If we suspect fraudulent or malicious activity on or from the password-protected account, we may decline a request or request that you provide further authenticating information. Making an authenticated consumer request does not require you to create an account with us. We will only use personal data provided in an authenticated consumer request to authenticate your identity or authority to make the request.
EUROPEAN UNION AREA, SWITZERLAND AND UNITED KINGDOM USERS
The following provisions apply only to users residing in the European Union Area (“EEA”), Switzerland and the United Kingdom.
Please note, in May of 2018 a new data privacy law known as the EU General Data Protection Regulation (“GDPR”) went into effect. Pursuant to GDPR, we are required to provide those residing in the EEA, Switzerland and the United Kingdom (hereinafter, the “EU Users”) additional information and rights related to the “Personal Data” we collect about them. We summarize such information and rights below.
HOW TO CONTACT US
The American Parkinson Disease Association (the Data Controller) is the owner and operator of the Website. If you need to contact us for any reason related to this Privacy Policy or your use of the Website, please contact us apda@apdaparkinson.org.
PURPOSE FOR INFORMATION COLLECTION
As noted in this Privacy Policy, you may visit our Website without being required to provide us with any Personal Data. However, should you decide to provide such information, the information we collect will be used to meet your requests, or to provide you with the applicable information or service requested, and as further described herein.
LEGAL GROUNDS FOR PROCESSING PERSONAL DATA
APDA will process personal data that we receive from EU Users on the ground that it is in our legitimate interest for the effective administration of the Website, to fulfill and/or address your requests, or to provide the functionalities and features as further described herein.
YOUR INFORMATION AND YOUR CHOICES; WITHDRAWAL OF CONSENT
GDPR provides EU Users with additional rights in respect to the Personal Data we hold about you, including the right i) to be informed about the Personal Data we have collected, and ii) to request a copy of the Personal Data, and iii) to have your Personal Data deleted, and iv) to lodge a complaint about our processing of your Personal Data with your local supervisory authority. Upon appropriate written request we will update or amend your Personal Data, but we reserve the right to use any information previously obtained to verify your identity or take other actions that we believe are appropriate and lawful. You may access, correct, or request deletion of your Personal Data – or request that we stop any processing of your Personal Data – by contacting us at the email address listed above. We will respond to your request within a reasonable timeframe.
Please note we may need to retain certain information for record keeping purposes, and there may also be residual information that will remain within our databases and other records, which will not be removed from such locations. Additionally, there may be circumstances in which we are not legally required to comply with your request because of the laws in your jurisdiction or because of exemptions provided in data protection legislation in general, and GDPR in particular. Finally, please note that we are not responsible for removing or deleting information from the databases of third parties (such as service providers) with whom we have shared information about you, but we will make the request on your behalf for such removal/deletion.
CHILDREN’S PRIVACY/NOTE TO PARENTS OF CHILDREN RESIDING IN THE EEA, SWITZERLAND AND UNITED KINGDOM
The Website does not intentionally or knowingly collect, use, or disclose personally identifiable information about EEA visitors to our Website that are less than 16 years of age. If a child under the age of 16 submits information to us through any part of the Website and APDA becomes aware that the user submitting the information is under the age of 16, the information provided will be deleted as soon as it is discovered and not used for any purpose. If you are the parent or guardian of a child under 16 years of age and believe that they have disclosed personally identifiable information to us, please contact us at apda@apdaparkinson.org or the mailing address below and be sure to include in your message the same user name and password and/or email address that you believe your child submitted, if applicable.
APDA
PO Box 61420
Staten Island, NY 10306
USA
PRIVACY POLICY EFFECTIVE DATE
This Privacy Policy is effective as of June 27, 2024.