This site is operated by the International Pemphigus & Pemphigoid Foundation (IPPF), a nonprofit organization registered in the USA as described in section 501(c)(3) of the Internal Revenue code. The IPPF’s EIN is 94-3207871. Our home office is located at 1331 Garden Highway, Ste 100, Sacramento, CA, 95833.
If you have any questions about your rights as a user of this Site, you may contact email@example.com.
A. Information We Collect
The information we learn from customers helps us personalize and continually improve your experience with the IPPF.
We collect two types of information about you: personal information (such as, your name, address, telephone number, e-mail address, and credit card number), and non-personal, aggregate information (such as information regarding the pages you have visited and your IP address).
1. Personally Identifiable Information
The only personally identifying information that we collect and store about you is the information that you have chosen to provide to us. Because we change our offerings and features from time to time, the options you have to provide us with personal information also may change, but here are some examples of situations in which you will have the opportunity to provide personal information to us:
- Creating an account;
- Signing up for emails, such as our Healing Heroes newsletters;
- Completing a form related to one of our services or registering for an event;
- Purchasing a service or registration;
- Downloading resources, tools, or other materials;
- Contacting us for technical support or customer service, such as “Ask a Coach”;
- Making a donation;
Depending on how you interact with us, the personal information we collect from you may vary. For example, to create an account we may ask only for an email address and password. In other circumstances, such as when you purchase a product, we may ask you to provide other information, which may include your name, phone number, postal address and credit card number. If you enter credit card information on the Platform in connection with a purchase, that information is sent directly from your browser to the third-party service provider we use to manage credit card processing; we do not store it on our servers. The service provider is not permitted to use the information you provide except for the sole purpose of credit card processing on our behalf.
Personal information will only be used for the reasons outlined in this policy, and will be retained only as long as necessary to fulfill the stated purposes, or for a period specifically required by law or regulation and thereafter will be disposed of securely or made anonymous so that it cannot be identified to any individual.
2. Non-Personally Identifiable Information
- We collect non-personally identifiable information about you in the following ways:
- Your Internet Protocol (IP) address or the proxy address of your internet service provider (e.g. Verizon, Comcast, etc.);
- The resource on our server accessed as a result of the request, such as the web page, image, etc.;
- The query in the request;
- The name and version of your web browser;
- The content of any sent or received cookie, as defined below;
- The Uniform Resource Locator (URL) that was accessed before making the request for our web server;
- Other environmental variables, as described below.
This information is commonly collected by Websites. It is only used to help us make our site more useful for you. With this data we learn about the number of visitors to our Site and the types of technology our visitors use
A non-persistent cookie enables a Website to temporarily store information on your computer as you travel from one page to another. This cookie is automatically deleted from your machine when you close your browser.
A persistent cookie is kept even when you close your browser. You can manually delete these cookies using commands specific to your browser and computer system.
The IPPF Website uses non-persistent cookies to help track items put in your shopping cart and to allow a member to remain logged in as they move among Web pages.
The IPPF uses a persistent cookie if a member selects the “Remember me on this computer” option when logging in so that the member does not have to re-enter their User ID and password on subsequent Site visits. The IPPF also, on an anonymous basis, uses persistent cookies to help track the number of times a person visits the Site.
Referrers, IP Addresses, Environmental Variables, and Device Information
We collect information through “referrers,” IP addresses, and various environmental variables. Information we collect may include but is not limited to the domain from which you access the Internet, the time you accessed the website, the type of web browser and operating system or platform used, the Internet address or the website you left to visit the website, the pages you visit while at the IPPF website and the Internet address of the website you then visit. We may collect IP address information in order to administer the website and to gather broad demographic information. We may also collect information about the device you use to access the website, including type of device, operating system, settings, unique device identifiers, and IP address. Whether we collect some or all of this information often depends on what type of device you’re using and its settings.
Google Analytics Information
We also collect information through Google Analytics Advertising Features, including Demographics & Interests reports. Google Analytics is a web analysis service provided by Google. Google utilizes the data collected to track and examine the use of www.pemphigus.org to prepare reports on its activities and share them with other Google services. Google may use the data collected to contextualize and personalize the ads of its own advertising network.
We use this information to track age, gender, parental status, and interests of the visitors to our website to better understand our audience and customize our website to meet the needs of our audience.
3. Aggregated Information
B. How We Use Information
We use the information we collect to provide our services. In order for us to best provide our services (and to help make it feasible for us to do so), it is essential that we are able to collect and use the information as described in this Policy. So it is largely necessary for fulfilling the relationship we have with you, and, where that is not the case, we have a legitimate interest in using the information we collect, including personal information, for these purposes:
- to provide you with personalized content, services, and recommended resources or tools you may be interested in; we also use your IP address and mobile device for these purposes);
- to customize and improve the features, performance, and support of the site;
- to process your requests and save your contact information for future services and donations;
- for internal operations, including troubleshooting, data analysis, testing, research, and service improvement (this includes use of your IP address and mobile device information to help diagnose problems with our service and to administer the websites);
- to communicate with you or initiate communication with you through other means such as email, telephone (including mobile phone), or postal mail, including through the use of contact information that you provide to us or (where it is lawful for us to do so) that we otherwise obtain from third-party resources;
- to analyze use of the website and improve the website;
- to create aggregate and statistical data that does not identify you individually and that we can commercialize (for example, we use mobile device data and IP addresses to gather demographic information);
- for other purposes that you separately authorize as you interact with the IPPF.
When we collect any information that does not identify you as a specific natural person (“Non-Personally Identifiable Information”), we are permitted to use and disclose this information for any purpose, notwithstanding anything to the contrary in this Policy, except where we are required to do otherwise by applicable law. If applicable law requires that we treat certain Non-Personally Identifiable Information as Personally Identifiable Information, we will use and disclose this information as Personally Identifiable Information in accordance with this policy.
C. How We Share Your Information
- We use affiliated and unaffiliated service providers all over the world (including web servers, cloud storage systems, CRM providers, email services, content support teams, and others) to help us deliver our service and run our business subject to strict confidentiality agreements. These companies are authorized to use your Personally Identifiable Information only as necessary to provide these services to us;
- We will otherwise share Personally Identifiable Information with your consent.
D. User IDs and Passwords
Members who have registered to access member-only content on the Site have unique user IDs and passwords. Users who register on the Site may use their E-mail address or other user name as their user ID and may choose their own passwords.
Passwords are the private property of registered users. Users should not share their passwords with third parties. For reasons of security and privacy, we will not give out passwords to anyone. If you forget your password, you can request that your account information be re-sent to the E-mail address you originally provided during registration.
E. Third Party Links
F. Other Important Privacy Information
If you are a resident of the European Economic Area, you have the following data protection rights:
- If you wish to access, correct, update or request deletion of your personal information, you can do so at any time by emailing us at firstname.lastname@example.org.
- In addition, you can object to processing of your personal information, ask us to restrict processing of your personal information or request portability of your personal information. Again, you can exercise these rights by emailing us at email@example.com.
- You have the right to opt-out of communications we send you at any time. You can exercise this right by clicking on the “unsubscribe” or “opt-out” link in the emails we send you. Registered users can manage their account settings and email marketing preferences as described in the “Choices Regarding Your Personal Information” section below. If you are an unregistered user, or to opt-out of other forms of marketing (such as postal marketing), you may email us at firstname.lastname@example.org.
- Similarly, if we have collected and processed your Personally Identifiable Information with your consent, then you can withdraw your consent at any time. Withdrawing your consent will not affect the lawfulness of any processing we conducted prior to your withdrawal, nor will it affect processing of your Personally Identifiable Information conducted in reliance on lawful processing grounds other than consent.
- You have the right to complain to a data protection authority about our collection and use of your Personally Identifiable Information. For more information, please contact your local data protection authority.
We respond to all requests we receive from individuals wishing to exercise their data protection rights in accordance with applicable data protection laws. Notwithstanding the foregoing, we reserve the right to keep any information in our archives that we deem necessary to comply with our legal obligations, resolve disputes and enforce our agreements.
G. Choice & Access to Personal Information Collected
We provide you with the following choices regarding the use of your information:
- You may choose not to provide us with any personal information, but we may not be able to process your requests;
- You may set your browser not to accept cookies, or to warn you when a cookie is being placed on your computer. If you choose not to accept cookies, however, your ability to navigate this website may be hindered and you will not be able to use our online shopping cart.
- If you would like to unsubscribe to any of our services or would like us to remove you from any of our mailing lists, please email email@example.com;
- You may access the personal information we have collected about you and correct any inaccuracies. Please contact us by email at firstname.lastname@example.org or by contacting us at the following address: Attn: Communications Manager, International Pemphigus and Pemphigoid Foundation, 1331 Garden Highway, #100, Sacramento, CA 95833 .
- Members may request that their information not be included in the member directory. If a member does not want to be included, please send an e-mail to email@example.com.
- If you do not want us to share your information, please send an e-mail to firstname.lastname@example.org.
- If you have concerns about the personal information collected or how it is used, please send an email to email@example.com.
We make every effort to have reasonable security measures in place to protect the loss, misuse, or alteration of information under our control, including using Secure Sockets Layer (SSL) technology in our shopping cart to collect and transmit your information. We will transmit the entire credit card number to the appropriate credit card company during order processing.
It is important for you to protect against unauthorized access to your password and to your computer. Be sure to log out when finished using a shared computer. In addition, please do not email us your credit card number. We cannot guarantee the security of email, and we will not be liable if your email is obtained by a third party.
We have implemented security measures to protect users’ personally identifiable information from loss, misuse, and alteration. We use security measures, such as encrypted storage and password protection systems, to safeguard the confidentiality of users’ personally identifiable information. We reserve the right to change these security measures to accommodate new security technologies and methods. Although we have implemented security measures to protect a user’s personally identifiable information, please be advised that no security measures are perfect or impenetrable and users assume the risk of any security breaches.
If you have any questions about the security of our website, please contact firstname.lastname@example.org.
I. How Long We Keep Your Personal Information
We keep your personal information only so long as we need it to provide the Platform to you and fulfill the purposes described in this Policy. This is also the case for anyone that we share your personal information with and who carries out services on our behalf. Retention periods can vary significantly based on the type of information and how it is used. Our retention periods are based on criteria that include legally mandated retention periods, pending or potential litigation, our intellectual property or ownership rights, contract requirements, operational directives or needs, and historical archiving. When we no longer need to use your personal information and there is no need for us to keep it to comply with our legal or regulatory obligations, resolve disputes and enforce our agreements, we’ll either remove it from our systems or depersonalize it so that we can’t identify you.
J. Notification of Changes
K. Use of Website Content
The information contained on the IPPF website is provided for general informational purposes only. None of this information is intended or should be construed to be legal advice or a legal opinion. Although reasonable effort is made to ensure that the information contained on the website is as accurate as possible, omissions and errors may occur and the information may not reflect the most current developments. The IPPF expressly disclaims all liability to any person with respect to the consequences of any act or omission committed based upon reliance, in whole or in part, on any of the contents of the website.
L. Contacting The IPPF
If you have any questions about this privacy statement, the practices of the IPPF or its online service, or any other aspects of this Website, please contact email@example.com or call our Communications department between 9:00 a.m. and 5:00 p.m. Monday – Friday, Pacific Time at 855-4-pemphigus.
All information you provide in any written communication will also be covered by this policy.
We may revise this Policy from time to time by posting an updated version on the website. The revised Policy will be effective immediately for unregistered users and users registering accounts or otherwise acknowledging the Policy on or after the revision date. For other users who registered accounts before the revision date, it will also become effective immediately. However, they can object to the new Policy within thirty (30) days after the revision date. If we make a change that we believe materially reduces your rights or increases your responsibilities, we will notify you by email (sent to the email address specified in your account) or by means of a notice on this website prior to the change becoming effective. We may provide notice of changes in other circumstances as well. We encourage you to periodically review this page for the latest information on our privacy practices. Your continued use of the Platform is subject to the most current effective version of this Policy.
N. What rights you have over your data?
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.