In addition, we disclose Personal Information if legally required to do so, if requested to do so by a governmental entity, or if we believe in good faith that such action is necessary to: (a) conform to legal requirements or comply with legal process; (b) protect the rights or property of NPF; (c) prevent a crime or protect national security; or (d) protect the personal safety of users or the public.
In the event NPF becomes the subject of a bankruptcy proceeding, whether voluntary or involuntary, the NPF or its trustee in bankruptcy may sell, license, or otherwise dispose of the information retained by NPF in a transaction approved by the bankruptcy court as is legally required.
In the event NPF is or may be acquired in whole or part by a third party by way of merger, consolidation, or purchase, we may disclose and transfer Information to the third party and any prospective acquirer.
The NPF may also share aggregated anonymous information about visitors to NPF Websites with its clients, partners, and other third parties so that they may understand the kinds of visitors to the NPF Websites and how those visitors use the site.
Personal Information You Post
If you post any Personal Information in public and/or social network areas of the NPF Websites, e.g., in online community forums or chat rooms, the Personal Information disclosed may be displayed to other users of these services and may be collected and used by others over whom we have no control. NPF is not responsible for the use made by third parties of Personal Information you post or otherwise make available in public areas of the NPF Websites and communities. If you remove Personal Information that you have made public on NPF Websites and communities, copies may remain viewable in cached and archived pages of the NPF Websites or if others have copied or saved that Personal Information.
Opt-In and Opt-Out Choices
The registration forms and other sections of the NPF Website where we collect your Personal Information provide you with relevant opt-in and opt-out choices regarding promotional activity and other communications with you. To access your Personal Information and our opt-in/opt-out online preferences, and to determine your preferences, you may contact getinfo@psoriasis.org.
E-mail
Emails to Donors, Participants, Subscribers, Members, and Users Who Request Information. Recipients may opt-in for first- or third-party informational emails or opt-out of all email communications, except transactional emails, such as a donation receipts and event/program specific information that the email recipient has registered for, by using the unsubscribe instructions at the bottom of any e-mail message.
E-mail to Users who have submitted a Request for Information. Individuals who have requested specific information from NPF are agreeing that NPF may contact them by e-mail in exchange for these free services.
You can request that we do not share your Personal Information by e-mailing us at getinfo@psoriasis.org. If you use more than one e-mail address or postal address, please identify each one. We will share such Personal Information when we believe release is appropriate to comply with the law, enforce our rights, or protect the safety of our constituents or others.
Text
If you have provided your phone number to NPF and consented to receiving text messages from NPF at the phone number provided, you may receive text messages from NPF in connection with services offered, events, or donation opportunities. You understand that:
- You are not required to grant consent as a condition of using the services offered by NPF;
- You may opt-out of these text messages at any time;
- Message and data rates may apply; and
- If your contact information changes, you should notify NPF by emailing getinfo@psoriasis.org.
Links to Other Sites
The NPF Websites may provide links to other World Wide Web sites or resources. You acknowledge and agree that NPF has no control over such sites and resources and is not responsible for the availability of such external sites or resources, and does not endorse and is not responsible or liable for any materials, advertising, products, or other materials on or available from such sites or resources or those sites’ data collection or privacy policies. You further acknowledge and agree that NPF shall not be responsible or liable, directly or indirectly, for any damage or loss caused or alleged to be caused by or in connection with use of or reliance on any such materials or goods available on or through any such site or resource or those sites data collection or privacy policies.
Monitoring of Information and Cookies
We monitor customer traffic patterns and site usage to help us develop the design and layout of NPF’s website. We may also use the information we collect to occasionally notify you about important changes to the websites, new services or features offered by NPF, and special offers and information we think you will find valuable. If you would rather not receive this information, please contact us through one of the channels identified in "How to Correct or Update Information" (below).
Google Analytics is used to analyze traffic to the NPF Websites. Google Analytics does not maintain individual profiles for visitors, nor does Google Analytics collect data that might identify the individual visitor. Google Analytics only collects aggregate data. Click here for more information about the Google Analytics privacy policy.
We collect Information, by way of a cookie, to help us evaluate how our sites are being used. A cookie is a small uniquely identifiable text file that is stored on your machine. A cookie collects Information that is used for statistical purposes and does not identify you in any way.
Most web browsers automatically accept cookies, but you can change your browser settings to prevent that. Even without accepting cookies, you can still use most of the features throughout the NPF Websites.
Protecting Personal Information
We provide reasonable technical, administrative, and physical controls to secure the confidentiality, integrity, and availability of Personal Information. Unfortunately, the internet is not completely secure. Although we are working to protect your Personal Information, we cannot guarantee the security of your information either in transmission or when stored. NPF utilizes advanced technologies, policies, and practices that prevent, detect, and monitor unauthorized access or misuse of resources. The organization implements layered security controls (Firewalls, IPS/IDS, encrypted DNS, email filtering, VPN, web filtering, anti-virus, anti-malware) to help identify, prevent, detect, and respond to security incidents. Personal Information on donors, volunteers, event participants and other constituents is recorded in a secure database. Our database vendor protects Personal Information according to the following security standards and certifications: NIST CSF, PCI DSS, ISO27001, SOC 1, SOC 1 type 2, and others. Access to stored NPF information is restricted to NPF staff on a need-to-know basis. No Personal Information is made publicly available at any point. If you have any questions about security on the NPF Websites, you may contact us at getinfo@psoriasis.org.
Payment Processing
All credit transactions conducted on the NPF Websites occur in a secure area of the NPF Websites to protect you from any loss, misuse, or alteration of information collected. When you make a donation, subscribe, or place an order online at any of the NPF Websites, your credit card information is protected through the use of encryption of web content using Transport Layer Security. NPF is compliant with PCI-DSS standards for the collection, storage, and processing of credit card information.
Association Policies Regarding Disclosure of Personal Information
From time to time, NPF may make certain of your information available to other nonprofit and commercial organizations whose services may be of interest to our supporters. Your name and address are only made available to these carefully screened organizations through third-party mailing agents for a limited use. This allows NPF to enhance our ability to acquire additional donors, which ultimately strengthens our ability to provide you with more superior services.
If you wish to opt out of this sharing of limited personally identifiable information with the list exchange, you may do so by sending an email message to getinfo@psoriasis.org. Please include your full name and complete mailing address and a request that we not exchange your information with other organizations.
NPF may provide aggregate statistics about our customers, sales, traffic patterns, and related site information to reputable third-party vendors, but these statistics will include no Personal Information.
Our Commitment to Children's Privacy
NPF produces websites, including psoriasis.org/our-spot as well as the "Youth" section of NPF's website (collectively, hereinafter, "Youth Sites"), that are intended for use by children, including those under the age of thirteen, and the adults in their lives. Protecting the privacy of children is especially important, and for this reason, we have adopted certain policies and procedures to help do so.
Personal Information about children is not collected for marketing purposes, and it is only disclosed to third parties when necessary (i.e., to respond to a court order or subpoena, to protect the safety of the child, to protect the security and integrity of our website, etc.). Additionally, we do not allow third-party companies to advertise to Our Spot users. We intend to keep the Youth Sites free from direct advertising.
Contact Us
If you have questions or wish to send us comments about our protection of children’s privacy, please send an e-mail with your questions or comments to ourspot@psoriasis.org or write us:
Our Spot
c/o National Psoriasis Foundation
Attention: Outreach Department
1800 Diagonal Rd., #360
Alexandria, VA 22314
USA
Online Community
For many years, NPF has sponsored an online community to support individuals living with psoriasis and psoriatic arthritis engaging with one another. Today, Twill Care (formerly Kopa™) is the official online community of the National Psoriasis Foundation. Individuals who register on http://care.twill.health/psoriasis agree to the privacy notice set forth by Twill. The Twill privacy notice can be found here.
NPF does not endorse or accept any responsibility for the content of external websites. For more information see our complete terms of use.
Citizen Pscientist
Citizen Pscientist is NPF’s global participant research network. Participants in Citizen Pscientist contribute their data to a research database that is de-identified for crowd-sourced analysis on the website. This data may also be de-identified and shared in an aggregate manner with researchers and other strategic partners. Individuals who register for Citizen Pscientist agree to the Privacy Notice set forth by NPF.
NPF Participant Surveys
NPF is committed to learning about how the disease impacts lives and advocating for those affected. To do so, we periodically conduct studies to learn more about everyday living with psoriasis and psoriatic disease. Please be assured that your individual responses will be kept confidential. We use this information to provide people who are living with psoriatic disease with programs and services to help them manage their condition. Results from a survey may also be published in magazines, on-line, in scientific journals, shared with partners, or presented at scientific meetings. In such cases, again be assured that respondent identities will remain strictly confidential. Potential risks from completing a survey may include the unlikely possibility that a breach of data confidentiality may occur. However, this risk is minimal. Participation in our surveys is voluntary, and refusal to participate will not impact your ability to access NPF’s services. If you choose to participate in NPF’s surveys, you may discontinue participation at any time.
Notification Guidelines
NPF does not send unsolicited commercial communications to individuals with whom they do not have consent/permission or a pre-existing or current business relationship. NPF provides all notified recipients with a clear, easy and effective method to unsubscribe to any and all online communications.
How to Correct or Update Personal Information
Here are the options for changing and modifying Personal Information previously provided.
Email getinfo@psoriasis.org or send a letter to:
National Psoriasis Foundation
ATTN: Data Privacy Department
1800 Diagonal Rd., #360
Alexandria, VA 22314
Your California Privacy Rights
California's "Shine the Light" law (Civil Code Section § 1798.83) permits users of the Website that are California residents to request certain information regarding our disclosure of Personal Information to third parties for their direct marketing purposes. To make such a request, please contact us at the email or physical address included below.
Where to Address Your Questions or Complaints
NPF welcomes your questions, comments, and concerns about this Privacy Notice, the practices of the Association, and your dealings with the NPF Website. Please email us at getinfo@psoriasis.org, or if you are a member, at membership@psoriasis.org. Alternatively, you can write to us at:
National Psoriasis Foundation
ATTN: Data Privacy Department
1800 Diagonal Rd., #360
Alexandria, VA 22314
Updated and approved by the NPF Board of Directors on March 15, 2023.