International Myeloma Foundation
Improving Lives and Finding the Cure
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Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Founded in 1990 by myeloma patient Brian Novis, Dr. Brian G.M. Durie and Susie Novis, the IMF is the world's first non-profit organization dedicated to improving the quality of life for multiple myeloma patients while working toward prevention and a cure. More than 16 year after his death, Brian Novis's vision continues to guide the IMF as it reaches out to patients and family, research, government and medical communities.
To implement its comprehensive array of Patient Programs and Services, the IMF has a dedicated and diverse staff that provides urgently needed medical information to more than 100,000 members in 106 countries. The IMF toll-free information hotline handles more than 400 calls per month while the website receives 600,000 visits per year. In 2005, the IMF mailed over 21,000 free Information Packs that include: IMF current publications covering treatment options, disease management, therapies and clinical trials; the IMF's quarterly publication Myeloma Today; an invitation to join the IMF's worldwide Patient-to-Patient directory; and information about the IMF's comprehensive services and programs. A cornerstone of the IMF since 1992, the IMF has conducted over 65 Patient and Family Retreats, educating over 10,000 people. The interactive seminar format offers a unique opportunity for attendees to meet with leading multiple myeloma experts.
The IMF also coordinates Services for Medical, Research and Healthcare Professionals to keep physicians and scientists abreast of advances in the myeloma field, provide much-needed research funding, and offer education for healthcare professionals. Announced in May 2003 the IMF sponsors Bank on a Cure the first international multiple myeloma-specific DNA project slated to collect 20,000 DNA samples for research. The IMF also sponsored the International Prognostic Index (IPI), which provides physicians with new myeloma diagnosis guidelines to pinpoint an individual's prognosis and select the most appropriate treatment. Through The Brian D. Novis Research Grant program the IMF annually funds up to $800,000, supporting the best research worldwide for myeloma and related diseases. To provide practicing clinicians and the international academic community with an opportunity to get the most current information and real-time feedback on new approaches and ideas from their peers, the IMF hosts clinical conferences and workshops. The IMF also seeks to enhance doctor patient information exchange and has developed Doctor Packs. This IMF initiative provides up-to-the-minute information on a monthly basis to doctor offices and clinics.
The Cure: Myeloma Research
The International Myeloma Foundation conducts myeloma research that is bridging the gap from long term remission to cure. Learn more at http://www.myeloma.org.
Myeloma Patient Education
The International Myeloma Foundation produces patient and caregiver education programs. From in person seminars and workshops to accessible online resources, such as digital and print publications, webinars, teleconferences, and video series - the IMF is often the first line of defense for the newly diagnosed patient and their families.
We believe in empowering patients to become partners with their medical teams in making treatment decisions.
Learn more about IMF's unparalleled Patient Education programs at http://www.myeloma.org
Patient Support and Advocacy
The International Myeloma Foundation believes that no patient should ever face their myeloma diagnoses alone. We have built a volunteer network of over 150 support group leaders that serve well over 5,000 members throughout the United States.
In addition, the IMF leads multiple coalitions of patient advocacy groups to encourage legislation that benefits all cancer patients in the United States and around the world.
Healthcare Professional Education
The International Myeloma Foundation conducts education programs for non-expert healthcare professionals, including community hematologists/oncologists and nurses who treat myeloma patients.
To learn more about our medical education programs, please contact us at [email protected]
Where we work
Awards
Honorary Doctorate 2019
Vrije Universiteit Brussel
External reviews
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive
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What challenges does the organization face when collecting feedback?
It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
International Myeloma Foundation
Board of directorsas of 02/21/2024
Dr. Brian Durie
International Myeloma Foundation
Term: 1990 -
Mr. Matthew Robinson
Christine Battistini
IMF Latin America
Mario Boccadoro
Loraine Boyle
Jason Katz
Benson Klein
Andrew Kuzneski
Robert A. Kyle
Heinz Ludwig
Edith Mitchell
Chuck Newman
Susie Novis
George Hayum
S. Vincent Rajkumar
Matthew Robinson
E. Michael D. Scott
Aldo Del Col
Myeloma Canada
Yelak Biru
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data