The IWMF Privacy Policy

The statements below outline the IWMF’s commitment to your privacy and to providing you with the most accurate information possible. Privacy of visitors to IWMF’s website is of the highest concern to the IWMF.

Medical Disclaimer

The information provided by the IWMF on is for your general information only. It is not intended as medical advice and should not be relied on as a substitute for consultations with qualified health professionals.

Because WM is an extremely rare disease, information about it can be conflicting and is constantly changing. Information on the IWMF website (including our publications) is limited and cannot cover all available information on the causes, diagnosis, prognosis, and treatment of WM. We encourage you to research further and extensively into those areas of medicine and patient care that relate to your specific conditions.

The IWMF does not endorse nor recommend any specific treatment, protocol, chemotherapeutic drug, pharmaceutical company, clinic or agency, physician or specialist, insurance company, hospital, or any other person or institution for treatment of WM. The Foundation takes no official position on medical recommendations, pharmaceutical pipelines, and/or treatments. Any representations by Officers, Trustees, or staff of the IWMF as to appropriate care or referrals of any kind are to be taken as statements by individuals and not as official positions of the Foundation.

We encourage you to take information and any questions to your individual health care provider as a way of creating a dialogue and partnership about your cancer and your treatment.

Information Collection and Use

The IWMF is the sole owner of the information collected on its website. The IWMF uses the contact information that we have collected from you to keep in touch with you and continue to make you aware of the activities of the IWMF, as well as WM-related research news and items of “legitimate interest.” The IWMF does NOT share, sell or exchange your information for marketing or fundraising purposes. All information that we have for you is held securely. This includes all contact information, as well as any health-related information, that we have collected and have stored in our database.

As part of our mission to support the educational needs of all our members, the IWMF will provide member/constituent name and postal address (not email address) to IWMF partner(s) in those instances where our partner(s) has an educational event that includes WM so that our members/constituents may be invited via mail to that event. The partners we may share this information with include the Lymphoma Research Foundation (LRF), the Leukemia & Lymphoma Society (LLS), and CancerCare.

You can browse and view much of the content on the IWMF’s website anonymously. The IWMF does not collect any personally identifiable information (such as name, address, or email address) from you unless you voluntarily choose to provide such information to us.

It is possible that if you register for an IWMF service, join the IWMF, or request our IWMF Torch magazine, you will receive our IWMF News, our emails with information about WM and/or the IWMF, or an online fundraising appeal. Only email addresses or regular mail addresses would be used for this purpose; we do not use treatment/condition-related information to target any potential participants and/or donors. Users may request to be removed from mailing lists at any time. To review or request corrections to your personal information collected by the IWMF, please contact us at sends e-mail). Also, if at any time you wish to opt out of receiving communications from the IWMF, please feel free to click on the “Unsubscribe” link located at the bottom of any email blast from us or simply contact us at sends e-mail).

Below are the general categories of information that we collect:

Contact information. We may ask for contact information such as your name, address, telephone number, email address, and contact preferences. We collect this information so that we may keep you informed about the IWMF; invite you to upcoming IWMF events and/or partner events in your area (such as Support Group Meetings or events sponsored by our partners like the LLS, LRF, or CancerCare); inform you of changes to our support services; or inform you of volunteer or other opportunities to support the IWMF’s mission. We consider this information private and limit how it is used and disclosed.

Demographic information. We may ask for limited demographic information such as your gender, race or ethnicity, date of birth, marital status, and primary language. This information is used to help us to better understand the individuals we serve or to better communicate with you. We consider this information private and limit how it is used and disclosed.

Health information. If you contact the IWMF seeking information about WM, request support from the IWMF such as by contacting our LIFELINE volunteers, or attend an IWMF Educational Forum or other IWMF events such as Support Group Meetings, then we may ask for limited health information to include the following: are you a patient, a caregiver, a family member or a friend; date of diagnosis; current treatment(s); and date of treatment(s). We use health information to help us better serve you and the entire WM community. We treat all health information as confidential, and it is not shared.

In the cases where information may be shared at an IWMF event such as Support Group Meeting(s), the Support Group Leader(s) are advised to remind members at the meeting that personal health information shared in the group meeting is confidential and not to be shared outside the group. Similarly, any personal health information disclosed one-on-one to LIFELINE volunteers is confidential and is not shared. And, data in the IWMF Patient Database is confidential and only available to the submitting member.

Donations and Financial information. If you make a donation to the IWMF, then in addition to your contact information, we may ask for financial information such as a credit card number or financial account number(s). This information allows us to process your donation. We consider this information confidential, and it is not shared. Donations made “in memory of” or “in honor of” will be treated as private and we will limit its use to publishing, with your approval, in the IWMF Torch the donor name and the name to whom the donation is designated.

If you contact the IWMF to donate land, or to establish a charitable remainder trust or a bequest, we may ask for you for additional information such as title and proof of ownership, etc. We consider this information private and limit its access, use, and disclosure to those parties who are related to the program or service.

Information about Research Proposals to the IWMF and Results of Research Funded/Partially Funded by the IWMFFrom time to time, the IWMF will request research proposals to which researchers will submit responses; or, researchers may independently request funding from the IWMF. These requests are considered confidential and the information will not be shared with anyone other than the IWMF Scientific Advisory Committee, the IWMF Research Committee, and the IWMF Board of Trustees for evaluation. In addition, the result(s) of all research funded completely or partially by the IWMF will be considered private, and the IWMF will not share these results without approval of the researcher or until they have been published by the researcher(s) in appropriate scientific journals.

Other information. Depending on the reason for your communication with the IWMF, we may collect other personal information from you. For example, if you want to speak to someone in your geographic area with WM, then in addition to providing you with the information requested (if available), we will ask you for your contact information and other pertinent information. We consider this information private and limit its access, use, and disclosure to those parties who are related to the program or service.

Photographs of Members. From time to time, the IWMF will solicit members to provide photos of themselves for use on the IWMF website and in the IWMF Torch magazine. The IWMF considers individual photos to be private and we will ask for your written consent to publish the photo(s). At such time that a provider and/or his family requests removal of the photo(s) from the website, the IWMF will comply.

Group photos taken at public event(s), such as an Ed Forum, partner conference, Support Group Meeting, etc. may be published on the IWMF website and in the IWMF Torch without consent. However, the IWMF will do its utmost to respect the privacy of members and upon request will remove such photos from the website and the electronic version of the IWMF Torch.


Cookies are small data files that a website places on your hard drive for record-keeping purposes. They assist us in making your interactions with the IWMF website easy and meaningful by providing enhanced functionality and aggregate traffic data. Standing alone, cookies do not personally identify you. Unless you choose to identify yourself to the IWMF (e.g., by filling out a website form) or have previously identified yourself to the IWMF, you remain anonymous to us.

You have many choices with regard to the management of cookies on your computer. All major browsers allow you to block or delete cookies from your system. To learn more about your ability to manage cookies, please consult the privacy features in your browser.

Google Analytics

The IWMF uses Google Analytics to collect information about your use of our websites. Google Analytics collects certain information, such as how often you use our website. The IWMF uses the information received from Google Analytics to improve our website. Google Analytics collects only the Internet Protocol (IP) address assigned to you on the date you use our website, rather than your name or other identifying information. The IWMF does not combine the information collected through Google Analytics with Personal Information (PI). Google’s ability to use and share information collected by Google Analytics about your visits to our websites is restricted by Google Analytics Terms of Use and the Google Privacy Policy.

Social Media

You may share information from our website with people associated with your social media account and your social media account provider. By doing so, you understand that the use of the information the IWMF shares will be governed by the social media provider’s privacy policy. Please note that any information you post within these public forums or social media pages may become public and may be read, collected, and used by anyone. Please exercise caution when deciding whether to disclose your personal information in these forums.

IWMF Connect

The IWMF collects information, including posts, from our online forums such as IWMF Connect to study, analyze, and improve the services we provide, and to advance cancer-related research conducted alone or in collaboration with other organizations or individuals. Information will be shared with third parties (which may include but is not restricted to individual research partners or organizations) only after personally identifiable information, such as name, address, telephone number, or username, has been removed. Those who participate in IWMF Connect are encouraged to also view the terms of use and privacy policy of the provider of that service, is external).

Third Party Cookies

Please note that at times, third parties (such as Google Analytics) may set cookies or use related technologies when you view and/or click their links. For example, these companies may collect and use information about you and your visits to the IWMF website and other websites in order to provide analytics services to the IWMF. The third party’s privacy policy and/or that of its service provider will govern the use of this information, and we are not responsible for the privacy practices of such companies. We encourage you to read these businesses’ privacy policies to learn about how they treat your information.

Other Online Support Organizations (e.g. LLS, LRF, etc.)

The IWMF collects information, including posts, from other online forums to study, analyze and improve the services we provide, and to advance cancer-related research conducted alone or in collaboration with other organizations or individuals. Information will be shared with third parties (which may include but is not restricted to individual research partners or organizations) only after personally identifiable information, such as name, address, telephone number, or username has been removed.

Policy of No Sharing

The IWMF will not share, sell, or exchange donor’s information for a third party’s fundraising or marketing purposes. As part of our mission to support the educational needs of all our members, the IWMF will provide member/constituent name and postal address (not email address) to IWMF partner(s) in those instances where our partner(s) has an educational event that includes WM so that our members/constituents may be invited via mail to that event.

Online Donations

Visitors to our website who make monetary contributions through our website are asked to provide information, which is kept on a proprietary database. We will not share, sell, or exchange donor’s information for a third party’s fundraising or marketing purposes.

Security Measures

The IWMF takes appropriate precautions to protect our site visitors’ information. Our websites use industry-standard Secure Sockets Layer (SSL) encryption on all web pages. This encryption allows your data to be safely transmitted over the Internet without being intercepted, read, altered, or deleted by a malicious third party. The encrypted data goes to a physically secure location where your information is stored on restricted-access computers located at restricted-access sites. No data transmission over the Internet or any wireless network can be guaranteed to be perfectly secure. As a result, while we try to protect your personal information, we cannot ensure or guarantee the security of any information transmitted to us, and you transmit such information at your own risk.

Transferring Personal Data from the EU to the US

The IWMF has its headquarters in the United States, and information we collect from you will be processed in the United States. The United States has not sought nor received a finding of “adequacy” from the European Union. The IWMF collects and accepts transfers of data about you to the United States directly from you, or from our International Affiliates who have your consent to transfer your data to the IWMF to enable you to receive information, education, and other services from the IWMF. The IWMF endeavors to apply suitable safeguards to protect the privacy and security of your personal data and to use it only consistent with your relationship with the IWMF and the practices described in this privacy policy.

Do Not Track does not recognize or respond to browser-initiated Do Not Track signals, as the internet industry has not fully developed Do Not Track standards, implementations, and solutions. To learn more about Do Not Track signals, you can visit is external).

Retention of Your Information

Information you provide or is provided for you to the IWMF will be retained for no longer than reasonably necessary to fulfill the purpose for which it was obtained. Your information will be disposed of in a manner that seeks to prevent loss, theft, misuse, or unauthorized access.

For EU Data Subjects

The European Union’s General Data Protection Regulation and other countries’ privacy laws provide certain rights for data subjects. Because the IWMF is not established in the European Union, these rights only apply in relation to the IWMF’s services to data subjects in the European Union. Among these rights is the right to know the purpose of the processing; the categories of personal data concerned; who else outside of the IWMF might have received the data from us (e.g. an IWMF International Affiliate); what the source of the information was (if you did not provide it directly to us) e.g. it may have been provided by an IWMF International Affiliate; and how long the data will be stored. Additionally, you have the right to ask for a copy to review and update your personal data if it is inaccurate. You may also request that we cease using your data for communicating our IWMF News, our emails, etc. (i.e. unsubscribe from these IWMF activities) or that we erase your data. You may also have a right to lodge a complaint with the appropriate data protection authority if you have concerns about how we process your personal data. We will, at your request, provide personal data that you have provided to the IWMF to you or transmit it directly to another controller if technically feasible.


The IWMF provides hyperlinks to other sites which are not under the control of the IWMF. These links are provided for your convenience and for your reference only. These links are not intended as an endorsement by the IWMF of the information contained on these websites or of the individual(s) operating these website(s).

The IWMF is not responsible for the privacy practices of websites hyperlinked to/from the IWMF website. We encourage you to be aware when you leave our website and to read the privacy statements of each website that collects personally identifiable information.

Updates to Our Privacy Policy

The IWMF may update this Privacy Policy from time to time. The IWMF will notify you by means of a notice on this website when a change becomes effective. We encourage you to periodically review this page for the latest information on our privacy practices.

Contacting Us

Questions or comments regarding this Privacy Policy should be submitted to the IWMF at sends e-mail). If you would like to opt out of receiving any mail or email communications from the IWMF, please contact us at sends e-mail).

Legal Disclaimer

The pages and other materials supplied on are provided by the IWMF “as is” and without warranties of any kind. When using you must take precautions to ensure that the pages and other materials from the website are free from viruses, worms, Trojan horses, time bombs, or other items of destructive nature. Our website may not be compatible with the web browser or other software you may use. There is no guarantee that our website will be available on a consistent or ongoing basis, and the provision of our website may be subject to periods of interruption or poor performance and may be terminated at any time.

The IWMF makes a great effort to update our website frequently so that information is accurate and current; however, it is possible that our website may include dated or inaccurate information, and information may be changed or updated without notice. The IWMF and its volunteer Board of Trustees and Officers, employees, volunteer medical advisors, and other volunteer representatives specifically disclaim all warranties with respect to and any of its contents, whether express or implied, including, but not limited to, implied warranties of merchantability and fitness for a particular purpose and the accuracy, completeness, security, and timeliness of any contents therein.

In no event shall the IWMF, or its Board of Trustees, Officers, employees, medical advisors, agents or other representatives, be liable to the user for any damages whatsoever, including any direct, indirect, special, consequential, exemplary, or punitive damages, arising out of or in connection with, relating to, resulting from, or based upon the use of our website or any of the contents or any hyperlinked sites, even if the IWMF has been advised of the possibility of such damages. Some jurisdictions do not allow the exclusion of certain warranties or the limitation or exclusion of liability for incidental or consequential damages, and accordingly, some of the above limitations may not apply to you.

Our website is hosted in the United States of America. The IWMF makes no representations or warranties that the pages or other materials on the website including, but not limited to its contents, postings, or replies, are legally appropriate or legally available for use outside the United States, and access to them from countries or territories where their use may be illegal is strictly prohibited. If you choose to access our website from a location outside the United States, you are responsible for complying with all applicable local laws. Any dispute, action, or other proceeding concerning the website shall be governed by and construed in accordance with the substantive laws of the State of Florida, in the United States of America, without regard to principles of conflicts of law. Any rights not expressly granted herein are reserved.

IWMF Vision Statement

  • A World without WM (Waldenstrom’s macroglobulinemia).

IWMF Mission Statement

  • Support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure.