Privacy Policy

At the International Myeloma Foundation (“IMF”, “Company”, “we”, or “us”), your privacy is important. We provide you this Privacy Policy (the “Policy”) to explain how we treat your personal information provided to us either offline, or online at this website or any IMF subdomains or affiliated websites (the “Site”). The IMF is committed to protecting the security of your personal and health information as well as maintaining your privacy. Your information is encrypted when transmitted over the Internet. It is stored on computer servers with limited access in controlled facilities. For more information about how the IMF protects the privacy of your personal and health information, please contact Jennifer Scarne, CFO, at 800-452-CURE or via email at [email protected].

This Policy is intended to help you understand the kinds of information we may gather about you when you visit the Site or use certain of the services offered on the Site, how we may use and disclose the information, and how you can control, correct, and/or update the information. We also have implemented a Donor Privacy Policy that explains how we treat information relating to our donors, as explained below.

By visiting this Site, you are accepting the policies and practices described in this Policy. Each time you visit the Site, you expressly consent to our collection, use, and disclosure of the information that you provide as described in this Policy and our Terms of Use.

Information We Collect

When you visit the Site, we may collect and use personal information about you, as well as other information. Personal information may include your name, address, email address, IP address, telephone number, fax number, credit card information, and other similar information that can be used to identify you. We may also collect information you voluntarily share with us through our chatbot feature, Single Sign-on Service, and/or telephone InfoLine, including medical history and medical symptoms, and we may collect transcripts of those interactions. We collect this information when you:

Provide it to us;
Fill out forms on our Site;
Report a problem with our Site;
Send correspondence or otherwise contact us;
Provide responses to surveys that we may send;
Through transactions that you carry out on our Site;
Provide information through search queries;
Communicate with our chatbot interface, or through our portal;
Communicate with our representatives over the phone on our InfoLine;
Communicate with our Site via the Single Sign-On Service; and
Post or otherwise provide content in public areas of our Site or transmitted to other users of the Site or third parties (collectively, “User Contributions”). Your User Contributions are posted on and transmitted to others at your own risk.

We may also collect and/or track usage information, which is information generated automatically as you navigate through the Site. More specifically, when you use the Site, we may collect and/or track details of your visit to the Site and the resources you access, including, but not limited to, traffic data, location data, and other communication data, including your Internet Protocol address, operating system, browser type, the date and time you accessed or left the Site, and which pages you viewed, and other usage data.

We may also retain log-in credentials such as your username and password. Likewise, we may also retain information provided by any social login service, such as Facebook, Twitter, Google, or Instagram, that you may use to access our Site, such as your name, birthday, profile picture, and information on your friends or followers, in accordance with the policies and procedures of the applicable platform.

Cookies and Tracking Technologies

We and our vendors, consultants, agents, and other service providers (collectively, “Service Providers”) may collect and store your usage information in log files as well as through the use of cookies, web beacons, pixel tags, embedded scripts, and other tracking technologies now and hereafter developed (“Tracking Technologies”). We use Tracking Technologies to, among other things, better serve you with more tailored information for our services, and for those of third parties, facilitate your ongoing access to and use of the Site, and collect and store information about your use of the Site. Users may decline the use of cookies by resetting their web browser. However, please be aware that if you block cookies, some Site functionality may be lost.

Use of Your Information

We use the information we collect from you primarily to enable us to provide our service to you in the best possible manner. Personal information may be added to our database and used for future calls and mailings regarding Site updates, new information and services, fundraising requests, and other announcements. In addition, your information may be used for the following purposes:

To provide you with information, products, or services that you request from us;
To communicate with you through the chat interface, the InfoLine, the Single Sign-On Service, the Portal, or in another manner;
To protect our rights, property, or to enforce the Terms and Conditions of this Site, including for billing and collection;
To comply with laws, regulations, court orders, or other legal processes:
To contact you or otherwise respond to your requests and/or inquiries;
For editorial and feedback purposes;
For marketing and promotional purposes;
For a statistical analysis of user behavior;
To improve the content of our Site;
To customize the content and layout of the Site;
To speed up your searches;
To recognize you when you return to our Site;
To administer the Site, including by monitoring and analyzing our Site traffic and usage patterns; and
In any other way that we may describe when you provide the information.

We believe that you should have control over who receives the personal information you provide to us. Therefore, we do not trade, rent, or sell your personal information, nor do we share your personal information with third parties other than in the circumstances described in this section. Further, we do not send donor mailings on behalf of other organizations.

We may share your personal information with trusted third parties or our affiliates to:

Act on our behalf to assist us in: providing our services to you, including to provide the information, products, or services that you request from us, to send postal mail and email and communicate with you regarding upcoming events, remove repetitive information from mailing lists, analyze data, provide marketing assistance, process credit card payments, provide website assistance, to enable SSO functionality, to enable chat feature functionality; to improve and personalize your experience on our Site;
Compile statistics and reports regarding our audience and the visitors of our Site and services; or
Deliver interest-based emails.

Such third parties have access to personal information as needed to perform their functions, but they are not allowed to use it for other purposes.

Other Circumstances: We may disclose your personal information to third parties if we have a good faith belief that disclosure is necessary to:

Comply with applicable laws, regulations, legal process (such as a subpoena), or enforceable government request; or
Protect against harm to our rights, property, or safety, our visitors, or the public as required or permitted by law; or
Fulfill our obligations as part of any actual or proposed purchase, merger or acquisition of any part of our business, provided that use of such personal information shall be limited to those purposes disclosed in this Privacy Policy; or
Fulfill the purpose for which you provide the information; or
For any other purpose disclosed by us when you provide the information; or
With your consent.

Security

We place great importance on the security of all personal information associated with our customers. We use commercially suitable physical, electronic, and managerial procedures to safeguard and secure the information we collect on our Site. These procedures include, but are not limited to, firewalls, intrusion detection, and Site monitoring. We also limit access to any personal information we receive to authorized personnel that need access in order to perform their jobs. However, no data protection procedures are entirely infallible. As a result, while we strive to protect your personal information, we cannot guarantee that it will be 100% secure. Your use of our Site, and therefore your transmission of data to our Site, is done entirely at your own risk.

Chatbot Feature Myelo

By choosing to interact with the Site’s chatbot or chat feature (“Myelo”) you acknowledge and agree to the terms of this Privacy Policy.

The chatbot is designed to provide general information and support related to multiple myeloma. It is not intended to replace professional medical advice, diagnosis, or treatment from qualified healthcare providers. As necessary, seek care from your clinician or contact 9-1-1 or visit your local hospital in an emergency. The information provided by the chatbot is for educational purposes only and should not be relied upon for making any medical decisions.

The information provided by the chatbot may not always be up-to-date or comprehensive, as it may take time to incorporate new developments in the field of myeloma.

While we strive to ensure the accuracy of the information provided, we cannot guarantee its completeness or applicability to your individual circumstances. If you have any concerns or questions about your health or medical condition, please consult with your doctor or healthcare team.

The chatbot does not have access to your personal medical records or data. It operates based on the information you voluntarily provide during your conversation.

We disclaim any liability for decisions made based solely on information obtained from the chatbot, and users are encouraged to independently verify any information provided.

Information you voluntarily share with the chatbot, including a transcript of the conversation, and non-personal information such as your device type, operating system, browser type, other usage data, etc. may be collected, recorded, and stored in accordance with the terms of this Privacy Policy. You can download a transcript of your conversation with the chatbot by clicking on the “download” button on the chatbot during your chat session.

We use data and information from your interaction with the chat feature to accordance with the terms of this Privacy Policy, and specifically to provide personalized responses and information relevant to your reported condition and concerns, to improve and enhance the chatbot’s functionality and user experience, and to generate anonymous aggregated data for research and analytical purposes.

We may share anonymized, aggregated data obtained from your interactions with the chat feature with research institutions or healthcare organizations for educational or scientific purposes. We may share anonymized data obtained from your interactions with the chatbot with a third-party software provider, for the purpose of improving the chatbot functionality on the IMF Site.

Single Sign-On Service

By using our Single Sign-On Service (“SSO”), you acknowledge and agree to the terms of this Privacy Policy and that we will be sharing your user name/login credential with third-party service providers that provide event management, videoconferencing services, software, and other products to us to enable your seamless access to their applications and platforms. While we take reasonable measures to protect your data, we cannot guarantee the security practices of these third parties. Use caution when accessing sensitive information through SSO-enabled services and review our Privacy Policy and their privacy policies as well.

We may collect information and data associated with your interactions with our SSO in accordance with the terms of this Privacy Policy, including but not limited to personal information (e.g., name, email address, phone number, etc.); login credentials (e.g. username, password, etc.), and non-personal information (e.g. your device type, operating system, IP address, browser type, pages visited, etc.).

We use data and information collected from your interactions with the SSO to provide and maintain this Site, to facilitate SSO access to third-party applications, to improve and personal your experience, and to communicate with you about updates and upcoming events.

Telephone InfoLine

By choosing to interact with our telephone InfoLine you acknowledge and agree to the terms of this Privacy Policy.

Information you voluntarily share on the Infoline, including a transcript of the conversation, may be collected, recorded, and stored.

We use data and information collected from your interactions with the InfoLine to provide you with information, products, or services that you request from us, to improve and personalize your experience, to communicate with you about updates and upcoming events, etc.

Third-Party Websites

Our Site may contain links to other sites, including those of third parties or business partners. While we seek to link only to sites that share our high standards and respect for privacy, we cannot be responsible for the privacy practices other websites use. By accessing other third-party websites or applications through our Site, you are consenting to the terms and privacy policies of those websites. It is possible that other parties may collect personal information about your online activities over time and across different web sites when you use our Site.

Access to Personal Information

Upon request via email ([email protected]), we will provide to users a summary of any personal information retained by us. Users may modify, correct, change, or update their personal information or cause their personal information to be removed from our database. We will only send personal records to the email address on file for the username associated with it. For California residents, please consult the “California Privacy Rights” section above for additional considerations. For European citizens, please consult the “International Visitors and European Citizen Privacy Rights” section below for additional considerations.

Our Site is hosted and operated in the United States (“US”). By using the Site, you are consenting to the transfer of your personal information to the US. If you are accessing our Site from outside the US, please be advised that US law may not offer the same privacy protections as the law of your jurisdiction.

For our customers residing in the European Economic Area (“EEA”), the General Data Protection Regulation (“GDPR”) may be applicable. The GDPR provides a framework for organizations to ensure protection of the personal information of European citizens and gives European citizens certain rights.

Legal Basis for Processing

If you are an individual located in the EEA, United Kingdom, or Switzerland, our legal basis for processing your personal information will depend on the personal information concerned and the specific context in which it is collected. However, we will normally collect or process personal information from you only where:

We have your consent to do so; or
We need the personal information to perform a contract with you (e.g. to deliver services).

In some cases, we may also have a legal obligation to process personal information from you or may need the personal information to protect your vital interest or those of another person. If we rely on your consent to process the personal information, you have the right to withdraw or decline your consent at any time in writing or as otherwise permitted. Please note that this does not affect the lawfulness of the processing based on consent before withdrawal, nor will it affect the processing of your personal information conducted in reliance on lawful processing grounds other than consent.

Retention

We will retain your personal information for as long as is needed to fulfill the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements, unless a longer retention period is required or permitted by law.

Your Rights

You have the right to request that we:

Provide you with information regarding whether we process your data, including any details relating to such processing;
Correct any inaccurate data we may have about you without undue delay;
Complete any incomplete information that we may have about you;
Under certain circumstances, erase your personal data without undue delay;
Under certain circumstances, be restricted from processing your data;
Under certain circumstances, furnish you with the personal data which you provide us within a structured, commonly used and machine-readable format; and
Under certain circumstances, make requests related to automated decision making and profiling.

Where we process your personal information solely on the basis of your consent, you have the right to withdraw consent to our processing personal information at any time. This will not affect the lawfulness of our processing before the withdrawal. You also have the right to lodge a complaint with their data protection supervisory authority at any time.

The exercise of the above rights might be subject to certain conditions and we might require further information before we can respond to your request.

California Visitors

If you reside in California, you have the right to ask us one (1) time each year if we have shared personal information with third parties for their direct marketing purposes. At the present time we do not release information to third parties for marketing purposes. To make a request, please send us an email ([email protected]). Indicate in your email that you are a California resident making a “Shine the Light” inquiry.

Donor Information

We believe that you should have control over who receives the personal information you provide to us as a donor (such as your name, address, zip/postal code, email address, telephone number). Therefore, we do not rent, trade, sell, or share your personal information with third parties other than in the circumstances described herein. Further, we do not send donor mailings on behalf of other organizations.

By submitting information to us, you acknowledge, consent, and agree that IMF may access, read, preserve, and disclose the personal information you provide to us as a donor, along with your usage history, submitted messages, or data, and similar information regarding your use of the Site, in order to: (a) comply with any applicable law, regulation, legal process, or governmental request; (b) detect, prevent, or otherwise address fraud, security, or technical issues; (c) respond to your requests for customer service; (d) protect the rights, property, or personal safety of IMF, its visitors, or the public, (e) where we sell any or all our business assets; (f) in any other way we may describe when you provide the information; or (g) as otherwise set forth herein. With your prior consent we may also provide your personal information to the agency you have designated as the recipient of your generosity.

Children’s Online Privacy Protection Act of 1998 (“COPPA”) Compliance

We are concerned about the safety of children who use the Internet. We want you and your family to feel secure when visiting the Site. We do not collect or use information from children under the age of 13 (“child” or “children”) unless we have verifiable consent from a parent or guardian. If we have collected information from a child after obtaining a verifiable consent from a parent or guardian, the child’s parents may access information at any time by contacting us at [email protected]. If the parent requests that we delete their child’s information, we will delete it. We do not and will not provide any personal information collected from children, regardless of its source, to any third party for any purpose whatsoever. No information collected from children is used for any marketing or promotional purposes whatsoever.

Opting Out

You may unsubscribe from our marketing communications by clicking on the “unsubscribe” link located on the bottom of our emails or by sending us an email at the address provided below.

Privacy Policy Updates

This Privacy Policy was last updated on August 15, 2024.

We update the Privacy Policy from time to time, so please review it regularly. If we materially change our Privacy Policy, we will notify you by posting a notice on the Site. Your continued use of the Site will be deemed your agreement that your information may be used in accordance with the new policy. If you do not agree with the changes, then you should stop using the Site and notify us that you do not want your information used in accordance with the changes.

Contacting Us

We welcome any questions, comments, or concerns you may have regarding this Privacy Policy. Please do not hesitate to contact us by email ([email protected])

Last modified: August 15, 2024

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