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Privacy Policy


Effective January 13, 2022

Date Last Modified: May 19, 2022

Young Onset Parkinson’s Network (“YOPN,” “we” or “us”) respects your privacy and is committed to protecting it through our compliance with this privacy policy (“Privacy Policy”). This Privacy Policy describes how we use, disclose and protect the personally identifiable information (“Personal Information”) that we may collect about you or that you may provide to us when you visit the website (the "Website"), or that we may obtain from third parties or through the other means described below.

Please read this Privacy Policy carefully. By accessing or using the Website, or by providing any Personal Information to us, you agree to the terms of this Privacy Policy.

What is the Young Onset Parkinson’s Network?

Young Onset Parkinson’s Network is a nonprofit, 501(c)(3) educational and charitable organization for those diagnosed with Young Onset Parkinson’s Disease (YOPD) as well as the individuals related to and/or caring for those with the disease.  The organization seeks to increase awareness of YOPD by providing information, resources and services to help members strengthen their mind and body within a supportive community. We envision a world where all those diagnosed with YOPD have what they need to live fulfilling lives far beyond their diagnosis. Through our network, members have the holistic support needed not only to manage, but to thrive with this unexpected, early diagnosis.

How do we collect information?

This Privacy Policy applies to information we collect:

  • On the Website when you submit a form or information to us or apply to one of the organizations that participate in our programs.
  • In e-mail, text and other electronic messages between you and the Website (including our web-based platforms) or our YOPN.
  • Through mobile and desktop applications you download from the Website which provide dedicated non-browser-based interaction between you and the Website or our YOPN.
  • Through your interaction with our YOPN on social media channels.
  • When you interact with our advertising and applications on third-party websites and services.
  • From third parties such as one of our partners, other service providers, technology providers, or other organizations that partner with us to provide programs and services.
  • In person directly from you at events or other programs.

 What information do we collect?

 The categories of Personal Information that we may collect from you or receive about you include, but are not limited to, the following: name, telephone number, e-mail address, YOPN, mailing address, user name and password, age or date of birth, gender, race, health information, interests, or other information that you may provide to us when signing up for membership, registering or participating in a program, or when otherwise communicating with us.

Whenever you visit or interact with the Website or its content, we and our designated service providers, which may include third party service providers, may use cookies to collect website traffic and performance data. Cookies are small files that a site or its service provider transfers to your computer’s hard drive through your Web browser to enable the site or service provider’s systems to recognize your browser and capture and remember certain information. These cookies may track things like your IP address, the type of operating system and Web browser you use and related information. We, and our service providers, also automatically track certain information about your activities on the Websites such as the pages you visit and how you arrived at our site. You can delete and block cookies via your Web browser’s settings. Note that the Website may not function correctly without cookies.

How Do We Use Personal Information?

We use personal information we collect about you or that you provide to us in the following ways: to present our Website and its contents in a suitable and effective manner for you and your device; to contact you to provide you with information or services that you request from us; to advertise services that we think may be of interest to you; to invite you to attend our events; to provide customer support, troubleshoot issues, manage accounts, and respond to requests, questions, or comments; to carry out our obligations and enforce our rights arising from any contracts entered into between you and us; and to notify you about any additions, upgrades, or changes in our services.

Legal Bases for Processing Your Personal Information

If you are in a country in the European Union, you are entitled to an explanation of the legal bases we rely on to process your personal information. The legal basis for collecting and using the personal information described above will depend on the personal information concerned and the specific context in which we collect it, which is discussed below.


We may process your personal information based on your consent such as when you donate or ask us to send you certain kinds of marketing communications. You have the right to withdraw your consent at any time without affecting the lawfulness of the processing based on consent before its withdrawal.

Our Legitimate Interests

We may process your personal information if doing so is necessary for our legitimate interests and your rights as an individual do not override those legitimate interests. For example, when we process your personal information to carry out fraud prevention activities and activities to increase network and information security, identify usage trends, determine the effectiveness of promotional campaigns, expand our business activities and improve our services and the content and functionality of our Website.

To Perform a Contract

We may process your personal information to administer and fulfill contractual obligations to you.

To Enable Us to Comply with a Legal Obligation

We may process your personal information to comply with legal obligations to which we are subject. This may include any requirement to produce audited accounts, any legal obligation to share information with law enforcement agencies, public or governmental authorities, and to comply with legal process.

Necessary for the Exercise or Defense of legal Claims

If you bring a claim against us or we bring a claim against you, we may process your personal information in relation to that claim. We are the Data Controller of all personal information collected from residents of the European Union. If you have any questions about or need further information concerning the legal basis on which we collect and use your personal information for any specific processing activity, please contact us using the “How to Contact Us” section below.

How do I opt-out from future communications?

If at any time you would like to unsubscribe from receiving future e-mails, you may opt-out of future communications by following the detailed unsubscribe instructions included at the bottom of each e-mail, Please note that if you are enrolled in one of our programs or have an account registration on the Website to use certain features or applications, we reserve the right to send you certain communications relating to your enrollment, your account, or your use of the Website or applications, and these transactional account messages may be unaffected if you choose to opt-out of marketing communications.

How do we protect your information?

We maintain appropriate physical, technical and administrative safeguards to protect your Personal Information against loss, misuse, and unauthorized access or disclosure. Please keep in mind that no electronic data transmission or storage of information can be guaranteed to be 100% secure or error-free and we cannot warrant or ensure the security of any information that you transmit to us.

Do we disclose any information to third parties?

We do not sell, trade, or otherwise transfer your Personal Information to third parties for their own marketing purposes, unless you opt-in or are offered the opportunity to opt-out and elect not to opt-out of such sharing at the time you provide your Personal Information. We may from time to time employ third parties to perform functions on our behalf such as research, data analytics, operating or hosting the Website, conducting our business, or providing services to you. We may share your Personal Information with such third parties, so long as those parties agree to keep your Personal Information confidential. However, non-personally identifiable visitor information may be provided to other parties for marketing, advertising, or other uses.

We reserve the right to disclose and transfer your Personal Information in connection with the sale of all or a part of our business, a corporate merger or other restructuring. We may also disclose your Personal Information, usage information and device identifier (such as IP address) to third parties to comply with a legal obligation, to respond to a valid government or law enforcement request such as a warrant or subpoena, to enforce the Website or other applicable policies, to respond to an emergency, or to protect the rights, property, safety or security of third parties, visitors to the Website or the public. Unless prohibited by law or court order, or unless we determine in our discretion that notification is inappropriate under the circumstances, we will take reasonable steps to notify all affected users of the request for information or intended disclosure prior to disclosure.

Your application to one of our programs will be held in strict confidence and will be used only for the purposes of that program. Once you submit a completed application to the program, we forward your application to the participating partner institutions specified in your application and therefore, we will disclose the Personal Information contained in the application to such third-party partner institutions as appropriate. Such submission may be made using a third-party application service.

Your Personal Information and Your Rights – Excluding Europe

We respect your rights in how your personal information is used and shared. You may request to review and make changes to your personal information and make choices about the kinds of marketing materials you receive (or choose not to receive marketing materials from the Foundation at all) by contacting us as described in the “How to Contact Us” section below.

Your Personal Information and Your Rights – Europe Only

If you are an individual in a country in the European Union, you have the right to make requests to: access the personal information we keep about you; rectify inaccurate personal information; place restrictions on our use of your personal information; object to our use of your personal information; ask us to delete the personal information about you we hold; have your personal information transferred to you or another party of your choosing, and make a complaint to the relevant supervising authority.

These rights include the following:

Asking us to access your personal information

You have the right to obtain from us confirmation as to whether we are processing personal information about you and, if so, the right to be provided with the information contained in this Notice. You also have the right to receive a copy of the personal information undergoing processing.

Asking us to rectify your personal information

You have the right to ask us to rectify any inaccurate personal information about you and to have incomplete personal data completed.

Asking us to restrict our use of your personal information

You have the right to ask us to place a restriction on our use of your personal information if one of the following applies to you: you contest the accuracy of the information that we hold about you, while we verify its accuracy; we have used your information unlawfully, but you request us to restrict its use instead of erasing it; we no longer need the information for the purpose for which we collected it, but you need it to deal with a legal claim; or you have objected to us using your information, while we check whether our legitimate grounds override your right to object.

Objecting to our use of your personal information

You have the right to object to our use of your personal information where our reason for using it is based on our legitimate interests or your consent (rather than when the reason for using it is to perform an obligation due to you under a contract with us).

Asking us to delete your personal information

You can ask us to delete your personal information if: we no longer need it for the purposes for which we collected it; we have been using it with no valid legal basis; we are obligated to erase it to comply with a legal obligation to which we are subject; we need your consent to use the information and you withdraw consent; you object to us processing your personal information where our legal basis for doing so is our legitimate interests and there are no overriding legitimate grounds for the processing.

However, this right is not absolute. Even if you make a request for deletion, we may need to retain certain information for legal or administrative purposes, such as record keeping, maintenance of opt-out requirements, defending or making legal claims, or detecting fraudulent activities. We will retain information in accordance with the “How Long Is Your Personal Information Kept” section below.

If you do exercise a valid right to have your personal information deleted, please keep in mind that deletion by third parties to whom the information has been provided might not be immediate and that the deleted information may persist in backup copies for a reasonable period (but will not be available to others).

The right to transfer your personal information to another service provider

You may request that we transfer some of the personal information you have provided to you or another service provider in electronic copy. This applies to personal information we are processing to service a contract with you and to personal information we are processing based on your consent.

Making a complaint

If you have any concerns or complaints regarding our processing of your personal information, please contact us as described in the “How to Contact Us” section below and we will do our best to answer any question and resolve any complaint to your satisfaction. If, for whatever reason, you feel we do not meet the standards you expect of us, you are also entitled to make a complaint to your local supervisory authority:

EU Data Protection Authorities (DPAs)

Swiss Federal Data Protection and Information Commissioner (FDPIC)

How Long Your Personal Information Is Kept

We will retain your personal information for as long as necessary to fulfill the purposes for which we collect it and as set out in this Notice and for the purpose of satisfying any legal, accounting, or reporting requirements that apply to us.


The security of your personal information is important to us. We take various reasonable organizational and technical measures to protect your personal information from unauthorized access, disclosure, alteration, or destruction. If required by law to do so, we will notify you and/or the relevant supervisory authority in the event of a data breach. However, we cannot and do not guarantee complete security, as it does not exist on the Internet.

Children’s Privacy

 The Website is not intended for children under 13 years of age, and we do not knowingly collect personal information from children under 13. If we learn that we have collected personal information from a child under age 13 without verification or parental consent, we will immediately delete that information. If you believe that we might have any information from or about a child under 13, please contact us using the information provided in the “How to Contact Us” section below.

How to Contact Us

If there are any questions regarding this privacy policy or you would like to access or update your Personal Information, you may contact us at and +1 (571) 234-1116.


Young Onset Parkinson’s Network

9003 Lupine Den Dr.

Vienna, VA 22182  


© 2021-2023 Young Onset Parkinson’s Network.
All rights reserved.

Young Onset Parkinson’s Network is sponsored in part by a grant from the Parkinson’s Foundation.

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