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Privacy Policy

Privacy Policy - Table of Contents

Welcome to www.pdf.org
Addresses and Phone Numbers of the Parkinson’s Disease Foundation
Control of Information
Purpose of Privacy Policy
Personal Information
Security of Personal Information
Online Donations
Information for Donations and Mailing List
Honoring or Remembering Others
Locations of Personal Information
Mailing List
Changes in the Mailing List
Policies Regarding Disclosure or Sharing of Personal Information
Requests Not to Share Personal Information
No Other Sharing or Disclosure of Demographic Information
Personal Correspondence
Policies Regarding Disclosure of Medical Information
Non-Personal Information
"Cookies"
IP Addresses
Email Guidelines
Protecting Personal Information
Use of Your Personal Information
Use of Aggregate Information
Policies Regarding Access to Research Grant Applications
Policies Regarding Disclosure of Research Grant Award Information
Links to Other Websites
Children's Privacy
Contractors
Legal Requirements
Changes to our Privacy Policy
Contact Us

 

Welcome to www.pdf.org
The Parkinson's Disease Foundation® (PDF®) welcomes your visit to its website, www.pdf.org.  PDF invites you to use the www.pdf.org website to "Ask the Expert" any question about Parkinson's disease, to order educational materials about Parkinson’s disease, to access archived webcasts and an occasional live webcast of information about Parkinson’s disease through PDWebcast, to apply for a research grant, to organize a fundraising event for PDFChampions, to enjoy artistic creations of persons with Parkinson’s or  to submit one of your works of art to Creativity and Parkinson’s or to make a donation to PDF. If you do not find the information you are seeking, then email, write or call PDF to ask your question.

Addresses and Phone Numbers of the Parkinson’s Disease Foundation
You may send an email to PDF at info@pdf.org or from the Contact Us link on the www.pdf.org website.

You may write to PDF at the following address:


        Parkinson's Disease Foundation
        1359 Broadway, Suite 1509
        New York, NY 10018.


You may call PDF at (800) 457-6676 or (212) 923-4700.

Control of Information
PDF controls the information and the artistic creations which are collected and are accessible on www.pdf.org. Publicly accessible information and artistic creations on www.pdf.org are protected by a compilation copyright of PDF and include materials and creations of which PDF or others own the copyright. Information to which access on www.pdf.org is restricted by password protected portals is protected as confidential information. Examples of confidential information are applications for research grants, documents intended only for the Board of Directors of PDF, for members of the People with Parkinson’s Advisory Council or for participants in a Clinical Research Learning Institute. PDF obtains signed confidentiality agreements from directors of PDF, members of the People with Parkinson’s Advisory Council or evaluators of applications for research grants and limits passwords giving access to confidential materials for them to individuals who have signed confidentiality agreements. Other examples of confidential information are personal information supplied by donors to PDF, by recipients of monthly emails, quarterly newsletters, printed publications, videos, computer discs or digital video discs or by viewers of webcasts and medical information supplied to “Ask the Expert”.  Restrictions on access to personal information collected through www.pdf.org are described below; however, artists may sign consents permitting public display of their postal and email addresses and phone numbers on the Creativity and Parkinson’s pages.

 


Purpose of Privacy Policy
This Privacy Policy explains the online information practices of PDF and the choices you can make about the way any personal information you provide to PDF or to its contractors is collected and used. For easy and direct access, PDF provides a link to this Privacy Policy from the home page and from all other pages of www.pdf.org.

Personal Information
Unless you are an artist who has signed a consent to the display of your postal and email addresses and phone numbers on the Creativity and Parkinson’s pages, PDF is committed to protecting the privacy of your personal information by keeping it or by requiring its contractors to keep it as confidential and in as secure an environment as possible. Personal information is "demographic information" or "medical information" which identifies you with a minimal degree of effort. Except as explained in this Privacy Policy, PDF will try to restrict access to your personal information to a limited number of personnel authorized by PDF or by contractors of PDF. 

 

Security of Personal Information
Security measures are used by PDF and by either Zoomedia, Inc. or Blackbaud, Inc. to protect against the loss, misuse or alteration of your personal information under the control of PDF.  The web servers for www.pdf.org are located in locked, secure environments under the control of Zoomedia, Inc. or of Blackbaud, Inc., which maintain their computer systems in accordance with reasonable industry standards to secure information.  Zoomedia, Inc. is responsible for the personal information and any confidential information which you submit online to the Parkinson’s Information Service (“PINS”) if you “Ask the Expert” a question or which you include with an application for a research grant. You should consult the Privacy Policy of Blackbaud, Inc. by clicking the link on the donation page or the personal profile page of www.pdf.org, because several PDF databases containing your personal information are stored on a separate Blackbaud, Inc. computer system.  No data transmission over the Internet can be guaranteed to be 100 percent secure. Perfect security does not exist on the Internet, so you use the www.pdf.org website at your own risk.

Online Donations
Website donations to PDF are processed by Blackbaud, Inc. and by International Automated Transactions Service (“IATS”), which are committed to providing safe, secure and private online transactions. You are deemed to authorize and to consent to the sharing by PDF with IATS and Blackbaud, Inc. of the personal information needed by them to process your online donations by making payments to PDF and by facilitating billing to your credit card company. For further details about the privacy practices and security precautions of Blackbaud, Inc. and of IATS, please consult the Blackbaud, Inc. privacy policy directly from the link on the donation page of www.pdf.org and consult the privacy policy of IATS at www.IATS.ticketmaster.com or send an email to IATS in Canada at IATS@ticketmaster.ca.

Information for Donations and Mailing List
Blackbaud, Inc. collects the following personal information through the secure online financial-transaction pages in www.pdf.org and shares that personal information with IATS: name, address, email address, phone number, and credit card information. The credit card information is not allowed by the credit card company to be retained by IATS or by Blackbaud, Inc. or to be shared by them with PDF. The rest of this personal information is shared by Blackbaud, Inc. with PDF so it may be used by PDF to acknowledge receipt of your donation for tax purposes and to include you on the PDF mailing list, unless you choose to prohibit inclusion of your personal information on that mailing list. If you do not wish to be added to the mailing list of PDF, the online donation page has an “opt-in” mechanism which can be unchecked by those donors who do not want to receive any additional email correspondence from PDF.


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

Locations of Personal Information
The www.pdf.org website is hosted by servers managed by Zoomedia, Inc. in the United States and part of the PDF database containing your personal information is maintained on servers managed by Zoomedia, Inc. in the United States, but the largest part of the PDF database containing your personal information and the records of your online donations to PDF are maintained on servers managed by Blackbaud, Inc. in the United States and the records of your online donations to PDF are also maintained on servers managed by IATS in Canada.


Mailing List

PDF provides a separate online form to enable you to join the PDF mailing list by creating a log-in user name and password. The personal information PDF collects through this password protected portal includes: name, address, email address, and phone number. This information is securely stored on servers maintained by Blackbaud, Inc. and is accessed only when PDF corresponds with people with Parkinson’s, caregivers, healthcare professionals, scientists or other people on its mailing list periodically during the year, either via email or via regular mail.

Changes in the Mailing List
Please log on to the appropriate page of the www.pdf.org website by using your password in order to select or to change your preferences or contact us directly at the Addresses and Phone Numbers of Parkinson's Disease Foundation set forth above if at any time you wish to be added to the mailing list or removed from the mailing list or if you would like to add personal information or to correct or change the personal information you have previously provided. To protect your privacy and security, we will take certain steps to verify your identity before granting access to your information or making corrections. Callers will be asked specific questions, including full name, address and phone number, in order to verify their identity and protect the privacy of PDF's donors and members of its mailing list.

Policies Regarding Disclosure or Sharing of Personal Information
PDF, like many other non-profit organizations, occasionally makes available, through rental or exchange on a one-time basis, to other non-profit organizations, which are carefully screened, the names and postal addresses of its direct mail contributors of $150 or less, but not of memorial donors. The other nonprofit organizations are required by contract to implement and maintain reasonable security procedures and practices appropriate to the nature of this demographic information in order to protect the demographic information from unauthorized access, destruction, use, modification, or disclosure. The other non-profit organizations will not have continued access to your name and address unless you respond to them directly, which you are free to do or not to do.


Requests Not to Share Personal Information

Every six months PDF asks direct mail contributors of $150 or less to reply if they wish PDF not to share or to rent their personal information to other nonprofit organizations. You can request that PDF should not share your name and postal address with other nonprofit organizations – “opt out” -- by checking the appropriate box when you submit information to PDF in connection with your donation, by logging on to the appropriate page of the www.pdf.org website by using your password in order to change your preferences, or by writing to PDF, by sending an email to PDF or by calling PDF. See Addresses and Phone Numbers of Parkinson’s Disease Foundation above.  If you use more than one postal address or telephone number, please identify each one.  If you do not opt out, then your permission to disclose demographic information about you to other nonprofit organizations is deemed granted to PDF.


No Other Sharing or Disclosure of Demographic Information

With the exception of sharing with other carefully screened nonprofit organizations names and postal addresses of contributors who have not elected to prohibit sharing their demographic information , as well as the display on the Creativity and Parkinson’s pages of demographic information about artists who have consented to the disclosure,  PDF and its contractors are the only organizations that use the demographic information collected on www.pdf.org.


Personal Correspondence

If you correspond with PDF through email, PDF may retain the content of and meta-data regarding your email messages together with your email address and responses of PDF on a hosted exchange server controlled by Microsoft Corporation for Office Outlook. You should consult the Privacy Policy of Microsoft Corporation for Office Outlook. Subject to the Privacy Policy of Microsoft Corporation, PDF provides the same protections for these electronic communications that PDF employs for information received by mail or by telephone. Any email PDF receives is read only by those individuals who are essential to answering the questions presented.

Policies Regarding Disclosure of Medical Information
By submitting a question to PDF, you are deemed to consent to the disclosure by PDF of your medical information to the doctors who assist PDF with the “Ask the Expert” service. Medical information includes diseases, treatments, lifestyle behaviors, family history, genotype, phenotype and other similar information. PDF will not make your medical information available to Blackbaud, Inc. for inclusion in the PDF database.

Non-Personal Information
Even if you do not send us any personal information, we collect information about how you use the www.pdf.org website. Our servers used to operate www.pdf.org collect non-personal information such as IP (Internet protocol) addresses, browser types, the name of your ISP (Internet service provider), information about where on the Internet a user comes from before arriving at the www.pdf.org website, visitor movement and click-through behavior, what pages of the www.pdf.org website a user visits, the order of those pages, and the amount of time spent on each page. Without combining this data with other sources of information, the collected information does not readily or personally identify individuals. A vendor performs this service for PDF by sending a cookie to gather this information, compile it, and report to us. We use the collected non-personal information to understand better your site usage patterns and the types of content and information that may help to improve our services and your experience on www.pdf.org and to provide anonymous aggregated reporting for internal audits.


"Cookies"

A cookie is a small data file that a website may send to your browser and which then may be stored on your hard drive. Cookies allow us to customize the information we provide to you according to your profile and preferences. We use cookies to save passwords for donors to PDF, viewers of webcasts, directors, PPAC members or research grant applicants or evaluators so they don't have to re-enter their passwords each time they visit www.pdf.org pages which are accessible by registered users possessing passwords.

 

Widely used on the Internet, cookies have become an industry standard. Our website uses cookies to simulate a continuous connection -- cookies let us "remember" information about your preferences and session, and allow you to move within areas of www.pdf.org  without reintroducing yourself. No personally identifiable information is stored in these cookies.

Although a cookie cannot, in and of itself, identify you, it can identify your computer. Your browser is most likely set up to accept cookies automatically. If you'd like to disable cookies, you may do so by adjusting the options or preferences in your browser. However, by doing so, you may lose some of the functionality of www.pdf.org.

 


IP Addresses
An IP address is a number that is automatically assigned to your computer whenever you begin service with an Internet Service Provider. We may collect IP addresses for the purposes of system administration and to audit the use of  www.pdf.org. Each time you log on to  www.pdf.org and each time you request one of our pages, our server logs your IP address. Although we log your session with us, we will not normally link your IP address to anything that can enable us to identify you.

Email Guidelines
You will receive monthly emails from PDF only if you have given PDF your email address in order to receive them. PDF utilizes the services of Blackbaud, Inc. to send mass emails, so Blackbaud, Inc. has access to your email address. Blackbaud, Inc. has agreements with Internet service providers (“ISPs”) to permit emails to be sent by contractors of PDF to individuals whose names and email addresses appear on lists of people who have not declined to receive emails from PDF. All email sent by PDF contains a link to a password protected portal where you may modify your profile of personal information maintained by PDF or may unsubscribe to any and all online communications from PDF.

 


PDF does not share with other organizations the names, postal addresses or email addresses which PDF gathers from recipients of monthly emails, quarterly newsletters, printed publications, computer discs or digital video discs or from users of the Ask the Expert Parkinson’s Information Service (“PINS”) or viewers of webcasts, although a regional Parkinson’s organization which co-sponsors a webcast also will receive that information about viewers of the particular webcast. From time to time PDF may send out email on behalf of other nonprofit organizations to which PDF provides support, but PDF does not provide them with access to any personal information that you have provided. PDF does not send unsolicited commercial email to individuals.

 

Protecting Personal Information
When you request information or make donations at a password protected portal on www.pdf.org, you use a secure server maintained by Blackbaud, Inc. The software on this secure server encrypts all personal information you input before it is sent to us. Furthermore, all of the transactional data which Blackbaud, Inc. collects for PDF is protected against unauthorized access with the use of digital certificates. Digital certificates for PDF are issued by VeriSign, an established signer of digital certificates.

Use of Your Personal Information
You may request copies of printed or other materials that we offer, you may register to watch a webcast or you may request an answer through the Parkinson’s Information Service (“PINS”) website feature called "Ask the Expert." In order to receive these materials, watch a webcast or receive your answer, you may be asked to furnish to PDF your name, postal or email address, telephone number or other information, such as whether you are a person with Parkinson’s, a caregiver-spouse, a caregiver-other, a physician/clinician, a nurse/nurse practitioner, a scientist/researcher or an allied healthcare professional. If you supply any of that information, it may be collected and used to assess the effectiveness of PINS and the "Ask the Expert" service or the popularity of a publication, a video or a webcast. PDF will not disclose your name, postal or email address or telephone number to any other organization, although a regional Parkinson’s organization which co-sponsors a webcast also will receive that information about viewers of the particular webcast.

Use of Aggregate Information
Aggregate information does not identify you or any other specific individual. PDF may provide aggregate statistics about donors, recipients of publications, recipients of “Ask the Expert” information, viewers of webcasts, website traffic patterns and related website information to reputable third-party vendors, but these statistics will include no personal identifying information.

Policies Regarding Access to Research Grant Applications
Permission from research grant applicants for PDF to grant access to confidential information about the research project and personal biographical information about the applicant on thewww.pdf.org website to a small group of disinterested research scientists is deemed granted upon submission of an application for a grant to PDF by filing it on the www.pdf.org website. To be granted access to that information, those peer review participants should be authorized by the Scientific Director of PDF to evaluate the application and should sign confidentiality agreements. 

Policies Regarding Disclosure of Research Grant Award Information
Permission for PDF to disclose to the public summary information about funding, the research project and the research scientist also is deemed granted upon submission of an application for a grant to PDF, so long as no information marked confidential is disclosed in the project summary. The purposes of such disclosure include publicizing PDF research grant awards, assessing PDF supported research scientists relative to subsequent success in obtaining funding from other agencies, and determining contributions of PDF supported research scientists to print and online research databases.

Links to Other Websites
PDF's site, www.pdf.org includes links, some temporary and some permanent, to other websites. PDF is not responsible for the privacy and security practices of any other website or the nature of the other website's content.

Children's Privacy
Neither the PDF website nor any of its content or services is or are designed or intended to attract children under the age of 13. We will not knowingly collect personal information from children under 13 years of age unless we receive their parent's written consent or we are otherwise permitted by law. We adhere to the 1998 Children's Online Privacy Protection Act (COPPA) which is administered by the Federal Trade Commission.


Contractors
Vendors we engage to provide services on our behalf, such as hosting, website development, database management, contribution collection, webcast viewing and support, may have access to your personal information, but they have agreed not to disclose the personal information or to use it for any purpose other than providing the requested services.  Our operations and maintenance contractors may have access to your personal information in the course of maintaining www.pdf.org or providing www.pdf.org or its end users with products or services. These contractors include the organizations that provide us with technology, services or content related to better operation and maintenance of www.pdf.org. Access to your personal information by these contractors is limited to the information reasonably necessary for the contractor to perform its limited function for us. We also require that our operations and maintenance contractors 1) protect the privacy of your personal information consistent with this Privacy Policy, and 2) not use or disclose your personal information for any purpose other than providing us and/or our end users with products and services.


Legal Requirements

We may release your personal information to other persons: (1) to comply with legal requirements such as a law, regulation, search warrant, subpoena or court order; or (2) to protect the safety of anyone, such as from a physical threat; or (3) to enforce this Privacy Policy in a legal proceeding to protect our property or rights; or (4) to investigate, prevent, or take action regarding illegal or improper activities; or (5) to carry out a merger or consolidation with another nonprofit organization, a disposition or transfer of all or substantially all of our assets, or any similar transaction. In the event that we are planning or legally compelled to disclose your personal information to another person for those reasons, we shall attempt to give you prior notice, unless doing so would violate the law or a court order, so that you can contest the disclosure or acquiesce in the disclosure.

Changes to our Privacy Policy
If our information practices materially change at some time in the future, we shall post that change to the www.pdf.org website. We shall try to use information in accordance with the version of the Privacy Policy under which it was originally collected. If you are concerned about how your information is used, please periodically check our website, especially this Privacy Policy.

Contact Us
If you have specific questions or concerns about PDF's Privacy Policy, if you would like to provide, change or correct your personal information, or if you wish to add your name to a mailing list or to remove your name from a mailing list, please contact us by logging on to the appropriate page of thewww.pdf.org website by using your password in order to change your preferences or by writing or calling us. See Addresses and Phone Numbers of Parkinson's Disease Foundation above.

 


Last revised August 29, 2008.
©2008 Parkinson’s Disease Foundation, Inc.