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Privacy Policy

International Waldenstrom’s Macroglobulinemia Foundation (IWMF)


Our Commitment to Privacy

The IWMF is committed to safeguarding your privacy. This policy explains the types of information we collect and how it’s used. The IWMF is the sole owner of this personal information and we do not sell or rent your information. We use information we collect from you to fulfill our mission, whether we receive it electronically, in written form or through oral communication.

Member/constituent information is used and disclosed only for the IWMF’s mission-related activities and operations and in other limited circumstances, such as when required for law enforcement or for public health activities. 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 which 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 Cancer Care. Sharing member constituent information with other parties shall not generally occur unless the member/constituent authorizes us to share the information. Similarly, when there is collaboration between the IWMF and/or an IWMF Support Group and a non-IWMF organization, for a meeting and/or event as an example, the IWMF member/constituent information is shared with the collaborating organization only when permission is given by member/constituent. And member/constituent information will not be published on the IWMF website, in the IWMF Torch or in any other IWMF publications without approval by the member/constituent.

This right is granted under this privacy policy free from any intimidating or retaliatory acts.

For easy and direct access, we provide a link to this policy and our website policy from the IWMF home page at http://www.iwmf.com/privacy-policy.

What does the IWMF collect?

Like most  organizations, the IWMF collects personal information whenever you call, email, or fax the IWMF Business Office, when you visit www.iwmf.com webpages , when you use our products or services (such as Info Paks, downloadable publications, LIFELINE, IWMF Connect, membership in an IWMF Support Group), when you register for IWMF events such as the IWMF Educational Forum or attend an IWMF Support Group meeting, when you join the IWMF, when you volunteer to help the IWMF, or when you donate to the IWMF.

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, CancerCare, etc.); 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 such as 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 the information may be shared at an IWMF event such as Support Group Meeting(s), the IWMF 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 IWMF. From 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 Meetings 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.

How does the IWMF protect your information?

The IWMF has adopted a number of recognized standards to protect the privacy of your information, and we have provided a description and an example of these standards below. However, not every particular use or disclosure in every category will be listed.

We restrict and protect how your information is used. We limit how your information is used to only those purposes related to your original inquiry/request or to further IWMF mission-related activities. For example, if you ask that patient-related WM information (such as our Info Paks, our IWMF Torch magazine, or other publications) be mailed to you, then we will use your name and address to mail the information to you. We will provide your contact information to our Support Group Leaders so that they may invite you to participate in local IWMF Support Group Meetings. We may also use your information for mission-related activities, management and administration, or to carry out our legal responsibilities. For example, we may use your information to identify an IWMF partner event that may be of interest to you, and the IWMF will invite you to that event; we may invite you to donate to or to volunteer for the IWMF; we may email you news alerts to keep you apprised of important information about WM or the IWMF; or we may advise you of upcoming US government action on healthcare legislation and encourage you to contact your US representative.

We restrict and protect how your information is disclosed. On occasion, we may have a need to disclose your information to third parties. We make every attempt to protect these disclosures. For example, we may hire other companies to provide limited services on our behalf, such as mailing our IWMF Torch magazine. If we do, then we only provide those companies the information that they need to deliver the service on a one time basis, and we ask that the contact information we provide be returned to us or destroyed. We prohibit them from using that information for any other purpose. We also require that those companies have strong privacy protections for the information that we disclose to them.

Aside from the above, we may disclose your information to third parties only upon your consent or at your direction.

We have strong office computer security protections.  The IWMF implements and maintains strong administrative, physical, and technical safeguards to protect the private and confidential  information which is stored, created, and/or transmitted in our office on computers, hard drives, servers, and in other print or digital form.

We conduct privacy communications programs. We require all IWMF employees and sub-contractors to annually review our privacy policy privacy and how to protect your information. And we extend this requirement to all our volunteers such as IWMF Board of Trustees, IWMF Scientific Advisory Committee, Support Group Leaders, LIFELINE volunteers, IWMF-Talk Manager, IWMF Patient Database Manager, IWMF Website Manager, IWMF Torch editor, Fundraising Committee, Advocacy Committee, Scientific Advisory Committee, Research Committee, etc.

What are your rights?

The right to access your information. Under our privacy policy, you have the right (upon request) to see your contact and other information that we maintain about you. The description will be sent via postal mail which we believe is the most secure method of communication. Further, we will respond to requests for updates or changes to your personal information. Contact us by telephone, email, or in writing at the address below.

The right to request restrictions. We recognize that you may wish to limit the ways in which we contact you, and we offer the following options for restricting internal and external sharing of your contact information:

  1. Do not contact me by telephone.
  2. Do not contact me by postal mail.
  3. Do not contact me by email.
  4. Do not share my contact information with other organizations.
  5. Do not contact me for fundraising purposes.
  6. Do not contact me for advocacy purposes
  7. Do not send me email IWMF news alerts
  8. Do not contact me or share my information with anyone.
  9. Remove me and my information from your data base

For More Information or to Report a Problem

If you have a question, wish to notify us of any desired restrictions, or believe your privacy rights have been violated, please submit your inquiry or file your complaint with us using the contact information below. To protect your privacy and security, we will take reasonable steps to verify your identity before providing information or making corrections. There will be no retaliation for filing a complaint.

Telephone: 941-927-4963

Email: office@iwmf.com

Mail: IWMF Business Office
6144 Clark Center Ave.
Sarasota, Florida  34238

Policy Updates

We reserve the right to update this policy and our website policy. Any changes will be effective immediately upon the posting of the revised policy.


IWMF US Website Privacy Policy

We respect and are committed to protecting your privacy. For this very reason we have adopted the following website Privacy Policy. The Privacy Policy lets you know how your personal information is processed and explains data collection and use practices for the IWMF website. The "IWMF website" includes all web pages and website content. By accessing the IWMF website, you are consenting to the information collection and use practices described in this Privacy Policy. We promise that we will use your personal information only in ways that are compatible with this Privacy Policy:

Does the IWMF collect IP addresses?

Every computer connected to the Internet is given a domain name and a set of numbers that serve as that computer's "Internet Protocol" IP address. When a visitor requests a page from any website within the IWMF website, our web servers automatically recognize that visitor's domain name and IP address. The domain name and IP address reveal nothing personal about you other than the IP address from which you have accessed our sites. We use this information to examine our traffic in aggregate and to investigate misuse of the IWMF website by its users, or to cooperate with law enforcement. We do not collect and evaluate this information for specific individuals. Our web servers do not automatically record e-mail addresses of the visitors.

What are cookies?

From time to time, a "cookie" may be sent from the IWMF website to your computer. A cookie is a small piece of data that is sent to your Internet browser from a web server and stored on your computer's hard drive. A cookie can't read data from your computer's hard disk or read cookie files created by other websites. Cookies do not damage your system. We use cookies to identify which areas of IWMF's network you have visited or customized, so those pages may be readily accessible the next time you visit. We may use this information to better personalize the content, banners, and promotions that you see on our site. You can choose whether to accept cookies by changing the settings of your Internet browser. You can reset your browser to refuse all cookies or to allow your browser to show you when a cookie is being sent. If you choose not to accept these cookies, your experience at our site and other websites may be diminished and some features may not work as intended.

How does the IWMF use single-pixel gifs?

The IWMF and its third party service providers may use single-pixel gif images, sometimes referred to as web bugs or web beacons, to count web page accesses and gather some general statistical information. The IWMF does not gather personal information through the use of these images. Our third party providers may use single-pixel gifs that can track personal information from cookies that may have been previously placed on a user's computer. The IWMF also uses various third party providers to track and analyze non-personally identifiable aggregate usage information from visitors to our websites in order to continuously improve the quality of our sites and services to you.

What personal information does the IWMF collect?

We will ask you when we need information that personally identifies you (personal information) or allows us to contact you. The personal information we collect may include your name, title, company or organization name, e-mail address, phone number, work or home address, information about your job function, and information about your company.

The IWMF may also offer access to some services that require online registration. We may use your registration contact information to send notification to you of products and services by e-mail and/or postal mail. We may also use your IP address internally and share it with third parties.

Will the IWMF disclose the information it collects to outside third parties?

We do not sell, rent, or otherwise give your personal information address to a third party, without your consent or as permitted by this Privacy Policy. IWMF will disclose personal information and/or an IP address:

  • To contact you regarding other products and services which may be of interest to you (including those we may offer jointly with other companies). At any time, however, you may opt out of such contact by e-mailing us at info@iwmf.com;
  • When we have your consent to share the information.


We may share with third parties certain pieces of aggregated, non-personal information, such as the number of users who searched for a particular location, for example, or how many users clicked on a particular link. Such information does not identify you individually. “Aggregated non-personal information” is information that is recorded about users and collected into groups so that it no longer reflects or references an individually identifiable user.

How does the IWMF address the fact that links are utilized that lead to external websites?

The IWMF website includes links to other websites, some temporary (e.g. links to articles and announcements on external websites) and some permanent (e.g. links to educational publications). The IWMF is not responsible for the privacy and security practices of any other Web site or the nature of the content contained therein.

How does the IWMF secure online financial transactions?

The IWMF cares about the security of your transactions and applies industry-standard practices and technologies to safeguard your credit card information. We use high-grade encryption and the secure https protocol to communicate with your browser software, which guards against interception of the credit card information you gave us. We also employ several different security techniques to protect your personally-identifiable information from unauthorized access by users inside and outside the organization. The web server for the IWMF is located in a locked, secure environment, and computer systems are maintained in accordance with industry standards to secure information. You should be aware, however, that “perfect security” does not exist on the internet, and third parties may unlawfully intercept or access transmissions or private communications.

Additional information regarding the privacy of donor information, when giving via the online giving forms on the website can be found at the following links (the organization currently processing online gifts for the IWMF is authorize.net):

Donations and/or information provided as part of “planned giving” via the IWMF website may be hosted by a third party (Crescendo), and as such, is covered under a separate privacy statement. See: http://iwmflegacy.com/?pageID=98.

Usage of Photos on Website

From time to time, the IWMF will solicit members to provide photos of themselves for use on the website; at that time, a consent is required from the provider. At such time that a provider and/or his family requests removal of the photo(s) from the website, the IWMF will comply. If group photos are taken at public events, such as an Ed Forum, partner conference, etc, such consent is not required. However, the IWMF will do its utmost to respect the privacy of members and remove photos from the website upon request.

Your Consent to This Agreement

By using the IWMF website, you consent to the collection and use of information by the IWMF as specified above. The IWMF reserves the right to modify this policy at any time and without notice. The most current version of the Privacy Notice is always the version that is published on this website.

Please send any questions about IWMF's website Privacy Policy to: info@iwmf.com

Last update: 04/20/2016

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